The FH Foundation https://thefhfoundation.org Sat, 17 Nov 2018 00:40:16 +0000 en-US hourly 1 Between Tests, Doctors’ Visits, and the Rest of My Life https://thefhfoundation.org/between-tests-doctors-visits-and-the-rest-of-my-life https://thefhfoundation.org/between-tests-doctors-visits-and-the-rest-of-my-life#respond Tue, 06 Nov 2018 17:18:11 +0000 https://thefhfoundation.org/?p=22350 Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease It’s been a while since we chatted. Life seems to have sped up there for the past few months. I guess it’s good when you make plans but even better when you get to carry them out. But delay no longer. I have been traveling, mostly. Some of it for work, and some of it for pleasure. Since the … Read More

The post Between Tests, Doctors’ Visits, and the Rest of My Life appeared first on The FH Foundation.

]]>
Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

It’s been a while since we chatted. Life seems to have sped up there for the past few months. I guess it’s good when you make plans but even better when you get to carry them out. But delay no longer.

I have been traveling, mostly. Some of it for work, and some of it for pleasure. Since the beginning of August, really, I have been hopping airplanes and Marriott hotels like it’s my full time job. I am tired. I won’t lie. I am doing it, mostly alone, but it’s taking a toll on my stamina.

During this whole time, I have also worked full time and have carried on with my cardiac rehab appointments, sometimes as often as three times a week. Just writing this makes me yawn.

In September, my regular doctor did some blood tests to check for a few things, but especially my cholesterol and liver values.

The good news is that my cholesterol values are at an all-life low. It is truly unbelievable how well drugs work for me, and how lucky I am. Not even one hour of apheresis in my entire life, and the drugs I am on just dropped the cholesterol this much. My LDL is still not at the target that the doctors want, which is below 70, but I am happy with it. News like these don’t happen often for HoFH patients!



The bad news is that my liver enzymes continue to be elevated. This trend started two years ago when I added the Coumadin, an anti-clotting medicine, after my heart surgery, as well as the Praluent injection. Now, my doctor is ordering a liver ultrasound to understand what is going on with it, if it is visible on an image. I am not really sure what the course of action will be to try to get the enzymes back to normal. Although I do have pain in my upper-right abdomen, I have virtually no other new symptoms from all this medication which seems to work so well. But … we will have to weigh the good with the risks and make some decisions pretty soon.

During one of my work travels, I had the chance to go back to Utah and meet with my surgeon for my yearly appointment. He insists that he still wants to see me every year till further notice. I love this, because I love him. What he has done for me, the life he has put into my remaining years is absolutely humbling. He was truly scared when he realized I had not only had my recommended yearly echo but also an angiogram since I saw him last year. He thought that something bad happened that required the angiogram. I explained that because I had moved to another state, I have a new cardiologist who is trying to understand my angina symptoms and explain my weird blood pressure numbers. Part of that quest was the angiogram to figure out whether there are severe blockages in my heart. (http://livingwithfh.blogspot.com/2018/05/another-cath-some-more-answers-and.html)

I shared with him that the same blood vessels that were 99 and 90% blocked before he did the surgery are now between 30-50% blocked. I asked him how could that happen, because as I said before, I cannot credit the Praluent alone with this huge improvement. He reminded me that not only did he bypass the blocked arteries, he also performed endarterectomies (https://en.wikipedia.org/wiki/Endarterectomy) on all of them. He also reminded me that it is clearly written in my operative report which I have. Now, if I didn’t just chalk this up to a “fancy medical term” and I would have actually looked it up, I would have known. But I did not. Now, why didn’t my current cardiologist know this, when he has my operative report himself, I am not sure. The cardiologist looked puzzled that I had bypasses at all because the main arteries were in good shape. Again: many thanks to my brilliant surgeon!

He said he not only bypassed them “he also cleaned them out for good measure.” I am telling you – the man is a saint! So, now the mystery of my virtually clean heart arteries is solved: endarterectomy + bypass grafts = functional arteries.

As I mentioned briefly, I have also been going to rehab since August, too. I am still very much underwhelmed with this program: there is not much monitoring, or explaining what is going on. We write our BP and pulse values in our charts ourselves. How long or fast we exercise seems to be up to us only. Whether it’s because of my very fast lifestyle this year, running through airports with heavy carry-ons, or rehab, my stamina seems to be much improved and my breathing is also a little less shallow and my chest a little less painful when I exercise. We have this steep hill in our neighborhood and every time I climbed it until recently (maybe a month or so ago), my chest would tighten and my left upper body would be completely numb and painful. These symptoms are gone now, and I can climb the hill, still slow, but with no pain.

I am sure that since we moved closer to sea level (we were at 4000 ft in Utah, and we are at 500 ft now), my breathing has gotten deeper and my heart feels better overall. Every time I go to Utah for work now, I clearly see the difference between how I breathe at home and how I breathe there.

There are days when I want to call the cardiologist and quit rehab altogether (still have 17 sessions to go – argh!), but I am really hating having to argue with him. He believes very strongly in this rehab business and that this alone will improve the blood flow in my heart, grow new arteries, and improve the pump function. I might just stick it out. Or at least I will try my best to for as long as I can. Trying to balance work and travels with a very strict rehab schedule, though, might decide otherwise. If I truly saw the full benefit of this exercise alone, without what I do on my own, I would definitely put my health first and finish the 36 sessions that come with this program. But I don’t see that going in for an hour and 45 minutes a couple of times a week and walking on a treadmill (which I can do at home, with no schedule, no driving for an hour one way, etc) makes that much difference for my health. We shall see …

I hope that all of you had a great summer and are having a beautiful fall. I hope you are ready to close out this year in health and peace.

Much health, to all!

To view original post visit:
https://livingwithfh.blogspot.com/2018/11/between-tests-doctors-visits-and-rest.html

Blog Post by A.W.

About this Blog

In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.

The post Between Tests, Doctors’ Visits, and the Rest of My Life appeared first on The FH Foundation.

]]>
https://thefhfoundation.org/between-tests-doctors-visits-and-the-rest-of-my-life/feed 0
A Global Call to Action on Familial Hypercholesterolemia (FH) https://thefhfoundation.org/a-global-call-to-action-on-fh https://thefhfoundation.org/a-global-call-to-action-on-fh#comments Wed, 31 Oct 2018 17:40:47 +0000 https://thefhfoundation.org/?p=22228 Since its establishment seven years ago, the FH Foundation has studied the 1998 World Health Organization (WHO) Report on Familial Hypercholesterolemia (FH). The 11 recommendations within the document guide our strategic efforts to address the large gaps in diagnosis and care of FH in the United States. At the 20th anniversary of this landmark report, the FH Foundation recognized an opportunity to reexamine the original recommendations and engage the global … Read More

The post A Global Call to Action on Familial Hypercholesterolemia (FH) appeared first on The FH Foundation.

]]>

Since its establishment seven years ago, the FH Foundation has studied the 1998 World Health Organization (WHO) Report on Familial Hypercholesterolemia (FH). The 11 recommendations within the document guide our strategic efforts to address the large gaps in diagnosis and care of FH in the United States. At the 20th anniversary of this landmark report, the FH Foundation recognized an opportunity to reexamine the original recommendations and engage the global community to discuss progress that has been made since the 1998 report and gaps in implementation that continue to exist today.

At the first Global Call to Action on Familial Hypercholesterolemia meeting on October 3, 2018, the FH Foundation convened FH experts, physicians, FH advocacy organizations, as well as, the original authors of the 1998 WHO Report on FH. The FH Foundation’s vision was to collaborate with the Global FH Network and World Heart Federation to come together as a unified community to make substantial progress towards formulating an expert consensus on methods to elevate FH as a public health priority around the globe.

 

Jasmine Patel, MPH, Community Relations Manager of the FH Foundation, introduced the initiative to the group and announced that the FH Foundation had successfully brought together stakeholders from 23 countries around the world to share their insights and expertise. “We have a diverse representation from low, middle, and high income regions throughout the world in this room.”

 

Directly following this heartfelt welcome, Dr. Børge Nordestgaard, MD, from the University of Copenhagen discussed progress made internationally to improve the diagnosis rates of FH. Currently, less than 10% of the FH population around the world has been identified, except for a few Western European countries with active FH screening programs, however we still have a long way to go.

 

The FH Foundation invited Dr. Gerald Watts, MD, from the University of Western Australia, Dr. Pablo Corral, MD, from FASTA University Argentina, Dr. Leiv Ose, MD, from University of Oslo, and Jules Payne from FH Europe and Heart UK to share the initiatives they are a part of that build multi-stakeholder collaboration to advance FH care in their regions.

“Last year, in partnership with the FH Foundation and the FH Iberoamericana Network, we launched Meeting of the Americas which is a survey initiative to understand the level of awareness and knowledge in physicians regarding familial hypercholesterolemia. Today, we have over 900 survey responses from countries within North, Central, and South America.” – Dr. Pablo Corral

Dr. Sam Gidding, MD, Chief Medical Officer of the FH Foundation, led a panel discussion with Muin Khoury MD PhD from the Centers for Disease Control and Prevention (CDC), Khalid Al. Rasadi, MD, from the Oman Society of Lipid and Atherosclerosis (OSLA), and Thomas Gaziano, MD, MSc, from the World Heart Federation that highlighted the role of policy and public health programs to move the needle forward for FH.

 

This discussion set up the meeting for the Global Call to Action on FH initiative. Stakeholders were divided into eight sections, which represented “themes” that were derived from a review of the 1997-1998 reports as well as consideration of new knowledge obtained regarding FH in the last 20 years. Topic areas included FH Diagnosis and Treatment, Awareness, National and International Policy and Public Health Programs, Family-based Care, HoFH Management, FH Registry and Research Funding, Advocacy, and Cost.

 

Highlights of the subgroup discussions included recognition of the increased knowledge about FH created by national and international registries and the key role national advocacy organizations for FH have played in increasing FH awareness. Both of these areas have seen significant growth over the past two decades.  The plight of patients with homozygous FH, despite initiation of new therapies was also recognized.

 

As a result, the group agreed to develop a Global Call to Action on FH initiative because of the continued low rates of FH identification and awareness despite the presence of effective screening tools and much more effective preventive treatments. We hope today’s scientific evidence and research regarding FH will create a new set of recommendations that continue to overcome the gaps recognized in the original 1998 recommendations.

 

To continue these efforts, the World Heart Federation and the FH Foundation will cohost an international roundtable in Dubai at the 2018 World Congress of Cardiology. The objective of this meeting will be to present the October 3rd deliberations to additional stakeholders including advocacy leaders and international experts to build further consensus.

The FH Foundation is grateful for the support of our sponsors:

  

The post A Global Call to Action on Familial Hypercholesterolemia (FH) appeared first on The FH Foundation.

]]>
https://thefhfoundation.org/a-global-call-to-action-on-fh/feed 2
Diet and Familial Hypercholesterolemia https://thefhfoundation.org/diet-and-fh https://thefhfoundation.org/diet-and-fh#comments Tue, 16 Oct 2018 15:47:11 +0000 https://thefhfoundation.org/?p=22094 Many people with familial hypercholesterolemia (FH), who have the opportunity to take medications that dramatically lower cholesterol, often ask me about the old standby of cholesterol management, a healthy diet.  Yes, you need a heart healthy diet.  For FH, this means a diet low in saturated fat and cholesterol and with the right number of calories to prevent obesity. This is in addition to medications or other therapies, since lifestyle … Read More

The post Diet and Familial Hypercholesterolemia appeared first on The FH Foundation.

]]>

Many people with familial hypercholesterolemia (FH), who have the opportunity to take medications that dramatically lower cholesterol, often ask me about the old standby of cholesterol management, a healthy diet.  Yes, you need a heart healthy diet.  For FH, this means a diet low in saturated fat and cholesterol and with the right number of calories to prevent obesity. This is in addition to medications or other therapies, since lifestyle alone will not lower cholesterol enough if you have FH.

A second question I am often asked, “given that my cholesterol is so high because of a genetic cause, can diet improve my life expectancy?”

I would like to argue that diet does help lower your cholesterol and those with the highest cholesterol might benefit the most from diet management. New genetic research provides further support for this argument.

Genetics and Diet

Three types of research suggest diet might help those with FH.  First are studies based on “mendelian randomization.” These studies compare people with cholesterol raising genes to those with cholesterol lowering genes to determine the lifelong impact of having lower cholesterol. There are many genes that do this and the results are consistent — for every 10 mg/dl lowering of LDL cholesterol there is a 15-20% reduction in risk.  Thus, a lifelong healthier diet has the potential to achieve the same long-term benefit as these studies.

The second type of research relates to a specific gene that raises and lowers cholesterol, NPC1L1. This gene regulates cholesterol absorption from the gut and is the target of action for ezetimibe, a cholesterol lowering drug. Studies of this gene support the mendelian randomization analyses above and we also know that ezetimibe works.  Therefore, if your diet is good and has low saturated fat and cholesterol it should also help.

The third type of research is on gene-health behavior interactions. These studies include smoking and obesity prevention as well as a heart healthy diet. In these studies, the people who benefit the most are those with a genetic predisposition to disease whether it is heart disease or diabetes. Why?  Because if you have the highest risk you are likely to get the most benefit.  If you are genetically unlikely to have heart disease, then you will still lower your risk with a healthy lifestyle, but the amount of lowering is actually less than for those with genetic risk.

Why Does Diet Work?

Believe it or not, diet lowers blood cholesterol the same way that statins, ezetimibe, and PCSK9 inhibitors do, by increasing the number of LDL receptors on the liver cell surface. The liver is always looking for cholesterol to make hormones, bile, and other key molecules. If the diet is low in cholesterol and saturated fat it must look elsewhere for cholesterol, so it makes more LDL receptors, and this lowers blood cholesterol.  Drugs do the same thing.

Back when lower potency statins and bile acid sequestrants were the only treatments available, scientists wondered if the benefits of diet plus medicine would cancel each other out, be additive, or even synergistic (the two together would be more potent). They found the effects were additive, diet and medication work together to lower cholesterol but a synergistic effect was not seen.

What is the Best Diet?

If your cholesterol is high, you need to lower your intake of saturated fat and cholesterol.  Randomized trials have shown that diets lower in saturated fat lower heart disease event rates in the general population. The American diet has improved over time as lower fat dairy products are readily available and less red meat is being consumed. Trans fats have been mostly eliminated from the food supply. People eat less eggs, high fat processed meats (e.g. sausage, bologna, hot dogs) than in the past and organ meats (e.g. liver) than in the middle of the twentieth century when heart attack rates were very high.  People with FH have likely benefited from these population shifts in the diet.

Current diet recommendations for FH are:

  • to eat less than 7% of total fat from saturated fat (the typical American diet is 12%)
  • to replace the saturated fat with polyunsaturated fats, protein or carbohydrates.

Many foods with saturated fat also have cholesterol so that a low saturated fat diet lowers cholesterol in the diet.  Two food groups are exceptions: shell fish, a few other types of fish, and eggs.  These have cholesterol, have a lot of healthy nutrients but do not have a lot of saturated fat.  Therefore, it is okay to have some shellfish or eggs in the diet, but I would not overdo it.

Unfortunately, there are very few diet intervention studies exclusively in FH patients.  Those that exist show that FH patients benefit from diet intervention at least as much as the general population.

Other Dietary Considerations Beyond Saturated Fat Restriction

Additional dietary considerations can include eating more oat products and substituting high saturated food. Oat fiber lowers cholesterol, so keep eating that oatmeal! Any healthy food (e.g. fish, fruits, vegetables, beans, low fat dairy products) that is substituted for a high saturated fat food will help lower your cholesterol.

Controversy exists for other diet treatments. Fish oil treatment or supplements do not lower LDL cholesterol. Whether or not fish oil prevents heart disease by other mechanisms is under study, they certainly are not harmful.  Plant sterols and stanols, often found in butter substitutes and other similar products lower LDL cholesterol levels but have not been shown to prevent heart attacks.  These diet products are often recommended, but long-term benefit is not as certain.

Special FH populations who might benefit the most from diet

There are currently three groups of FH patients for whom diet might be especially helpful.  First are children who are less than 10 years of age and are not ready to start on medication.  Learning to like a healthy diet might also have lifelong benefit.  Second are pregnant women.  Often cholesterol lowering medications are stopped during pregnancy and breast feeding, so a healthy diet will lower cholesterol levels in that setting. A third group that is emerging and is likely to become more numerous are people with an FH gene but have LDL cholesterol below treatment thresholds. These individuals are at higher risk but are currently not candidates for lifelong medication.  Diet in this setting will have an important impact on heart disease prevention.

Summary

Patients with FH will get some benefit from diet because they are at the highest risk for heart attacks. The amount of benefit from diet change depends on the baseline diet.  If your diet is already good your cholesterol might already be 20-40 mg/dl lower than if your diet was poor.  Diet effects are less significant on ezetimibe, but there are no studies to provide information on this. FH patients currently not eligible for medication will definitely benefit from diet management.  Diet might lower total medication dose in some people but there are no studies to confirm or refute this. LDL lowering from diet is not as great as from high potency statins or PCSK9 inhibitors, so these must be continued to achieve LDL cholesterol treatment goals in most cases.

 

About the Author

Sam S. Gidding, MD is the Chief Medical Officer of the FH Foundation. Dr. Gidding is known for founding PEDAL, a consortium dedicated to prevention of adult onset lipid related diseases beginning in youth. He is a member of the ACC/AHA task force on clinical practice guidelines and has participated in the development of new adult and pediatric blood pressure guidelines. He has previously worked on guidelines/scientific statements on familial hypercholesterolemia, hypertension, tobacco, obesity, nutrition, diabetes, and congenital heart disease for AHA, AAP, NHLBI, WHO, CDC, EAS, NLA, and ADA. Dr. Gidding has been a visiting professor at the Cleveland Clinic, University of Miami, University of Pittsburg, University of West Virginia, Children’s Hospital of Philadelphia, Texas A and M University, Brown University, the University of Hawaii, Montefiore Hospital, and the University of Michigan and lectured internationally.

Past clinical interests included preventive cardiology, general pediatric cardiology, echocardiography, exercise, and heart failure/transplantation. Prior funded research includes co-investigator for the echocardiography reading centers of the TODAY and CARDIA studies and a study on cardiovascular risk in Down syndrome. He was a co-investigator of the DISC study and collaborated with the Bogalusa Heart Study. Dr. Gidding participated in many local studies on congenital heart disease, on the cardiovascular morbidity of obesity, and early imaging of atherosclerosis. He helped design the DO-IT trial, a statin intervention trial in adolescents funded by the Pediatric Heart Network (NHLBI) and remains a site co-investigator for the AMGEN pediatric PCSK9 inhibitor trial.

 

The post Diet and Familial Hypercholesterolemia appeared first on The FH Foundation.

]]>
https://thefhfoundation.org/diet-and-fh/feed 1
From an Obscure Past into a Bright Future: on FH Awareness Day https://thefhfoundation.org/21900-2 https://thefhfoundation.org/21900-2#respond Mon, 24 Sep 2018 01:18:31 +0000 https://thefhfoundation.org/?p=21900 Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease I was diagnosed with FH when I was 8. That was in 1983, and it was back in Romania. Back there, it was a very rare and obscure disease, but they at least knew enough to know it is inherited from a parent and that you would have 50% chance to pass it on to your kids. My numbers … Read More

The post From an Obscure Past into a Bright Future: on FH Awareness Day appeared first on The FH Foundation.

]]>
Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

I was diagnosed with FH when I was 8. That was in 1983, and it was back in Romania. Back there, it was a very rare and obscure disease, but they at least knew enough to know it is inherited from a parent and that you would have 50% chance to pass it on to your kids. My numbers were off the charts high, far more than my dad’s and his dad’s before me. They did not make the distinction between Heterozygous FH and Homozygous FH at that time, to understand that my numbers were so high that both my parents probably have it. They never suspected my mother. Her mother did not have high cholesterol so she didn’t think she did, either, and she never tested hers till much later in life. After all, she was 30 when I was diagnosed. Unless you had a family history of high cholesterol, heart disease, or strokes, like my dad had, high cholesterol was an old people’s disease. There were no effective drugs in Romania and apheresis was never offered to me.

I came to the US in 1998 and I was put on statins right away which slashed my numbers in half (I was in the upper 300’s) – still high but lowest I had ever been. I struggled to learn more information about my disease. All the doctors I was seeing, although they said the name of the disease to me, never put the name of my disease on a medical form. I insisted with every visit that I have Familial Hypercholesterolemia, but they kept writing “dislipidemia” or “complex dislipidemia” or “high cholesterol” on my charts. I wanted to understand why my numbers are so big, and why some people (like my dad) had lower numbers. I wanted to understand what other treatments science was working on, I wanted to understand how other people with FH live and how their journeys were, but I found no information at that time.

Finally, after many years of a knowledge vacuum, I decided to start this blog, in 2011. I was hoping that at least I could document my own story and some other people that would just now find my blog and see some similarity between my story, my family’s story, and theirs might learn something they were eager to know, like I was.

Shortly after that, the FH Foundation was founded (same year), but I did not learn about it till maybe 2-3 years later. Since then, lots of positive things have happened for me, and for many people with this disease:

  • Thanks to the exposure to the FH foundation and the education that they do, I have learned about the difference between HoFH and HeFH after I was genetically tested for this. I know now that I am an HoFH patient and that my mother most positively has FH, as well. She is now religiously taking statins, although the CVD damage has already been done.
  • Also thanks to the FH foundation I have met a lot of people like me and I understand more about everyone’s challenges with this disease. I know now that we’re not all alike. There are as many symptoms and medical resources as are patients, for the most part. There is no ‘one size fits all’ when it comes to the symptoms, the complications, or the medical resources we have available to us for treatment when it comes to this disease.
  • The FH Foundation played a huge role in getting our disease a medical code, so now our claims can be properly filed with our insurances – our disease is not just a disease of “high cholesterol”; our disease is treated differently than just high cholesterol and our risk factors for heart disease and stroke are very different than the “regular” high cholesterol patients.
  • Through the network of physicians and researchers that they work with, the FH Foundation continues to play a huge role in educating clinicians about this disease so they can be better prepared for patients like us.
  • We now have websites, Facebook pages, Twitter feeds, Instagram accounts where people document their stories and share information with all of us.
  • We now have an FH Awareness Day and Month! We have come of age!
And these are just some personal observations about benefits I have directly felt over the years where the FH Foundation has contributed directly to improve the knowledge and the awareness in our communities for this disease.

My latest proof about how far this disease has come, in recognition alone, came just this past week when I received yet another write-up from my medical chart after a doctor’s visit. This was not a note from the cardiology office, but from my regular doctor. I am including the picture below. This is the first time in my 43 years of life and in my 35 years as an FH patient when I see my disease spelled out for what it is on paper.

My latest list of diagnoses includes the correct one, finally: Homozygous familial hypercholesterolemia



Tomorrow is FH Awareness Day – another incredible proof of how far we have come. I am incredibly grateful to what every patient, every advocate, every clinician is doing to bring this disease out from obscurity and share the wealth of knowledge we now have about it. With every small step, we make a giant leap towards much better quality of life and possibly longevity that FH patients will have for many years to come. I am looking forward to many more years of accomplishments and recognition.

To all, good luck, much health, and let’s all share the story for a brighter, more knowledgeable future ahead! Oh, and Happy FH Awareness Day, too!

To view original post visit:
http://livingwithfh.blogspot.com/2018/09/from-obscure-past-into-bright-future-on.html

Blog Post by A.W.

About this Blog

In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.

The post From an Obscure Past into a Bright Future: on FH Awareness Day appeared first on The FH Foundation.

]]>
https://thefhfoundation.org/21900-2/feed 0
International Atherosclerosis Society and FH Foundation Announce Partnership https://thefhfoundation.org/international-atherosclerosis-society-and-fh-foundation-announce-partnership https://thefhfoundation.org/international-atherosclerosis-society-and-fh-foundation-announce-partnership#comments Wed, 12 Sep 2018 16:47:03 +0000 https://thefhfoundation.org/?p=21838 The International Atherosclerosis Society (IAS) and the FH Foundation, a patient-centered nonprofit organization dedicated to research, advocacy, and education of familial hypercholesterolemia (FH), are pleased to announce a partnership to improve awareness of FH and elevate FH on the global policy stage. FH is the most common genetic condition leading to very high cholesterol and early heart disease. One in 220 people or 30 million worldwide have FH, but 90% … Read More

The post International Atherosclerosis Society and FH Foundation Announce Partnership appeared first on The FH Foundation.

]]>

September is known globally as Cholesterol Awareness Month and as part of this movement, the FH Foundation has distinguished September 24 as “FH Awareness Day.” On this day and throughout the month of September, the IAS and FH Foundation will be highlighting “FH Can’t Wait,” a national public awareness and advocacy campaign developed by the FH Foundation, which aims to ensure that anyone with a family history of cardiac events and high cholesterol get screened for FH and start treatment.

“Educating the public about FH awareness is an extremely important initiative for the IAS,” said Raul Santos, President-Elect of the IAS. “We are excited about our partnership with the FH Foundation and how the IAS’ global reach with our members societies can help spread the word about the seriousness of FH and its effects that can begin at birth.”

The two organizations are also working together to advance global public policy. The work has spanned determining the awareness and perceptions of FH within the primary care physician community in North and South America, as well as work to advance global recommendations for the identification, treatment and care of FH.

“FH represents a unique opportunity to address heart disease, the number one cause of morbidity and mortality globally, through early identification and treatment of this high-risk population,” said Katherine Wilemon, founder and chief executive officer of the FH Foundation. “Our partnership with the IAS expands reflects the commitment of both organizations to prevent the pathology of coronary disease in the over 30 million people living with this genetic condition around the world”.

Join the IAS and the FH Foundation in educating the public about FH Awareness Day by utilizing the FH Awareness Day Media Kit. The Foundation will also be hosting a Tweet-a-Thon on September 24 at 9 a.m. PST/11 a.m. CST/12 p.m. EST using the hashtag “KnowFH.” Join in the online discussion.


The International Atherosclerosis Society (IAS) is a federation of 67 member organizations representing 57 countries whose basic missions are to promote the scientific understanding of the etiology, prevention, and treatment of atherosclerosis. The IAS exists to coordinate the exchange of scientific information among the constituent societies, to foster research into the development of atherosclerosis, and to help translate this knowledge into improving the effectiveness of programs designed to prevent and treat this disease.


The FH Foundation is a leading research and advocacy non-profit organization focused on reducing heart disease by driving scientific understanding and evidence-based care of FH. The mission of the FH Foundation is to save lives by contributing to scientific research that leads to greater understanding and improved diagnosis and treatment of familial hypercholesterolemia worldwide. Please visit www.TheFHFoundation.org for more information.



The post International Atherosclerosis Society and FH Foundation Announce Partnership appeared first on The FH Foundation.

]]>
https://thefhfoundation.org/international-atherosclerosis-society-and-fh-foundation-announce-partnership/feed 1
My Race for FH https://thefhfoundation.org/my-race-for-fh https://thefhfoundation.org/my-race-for-fh#respond Tue, 28 Aug 2018 16:44:29 +0000 https://thefhfoundation.org/?p=21667 I was one of the first people to sign up for the FH Foundation’s 2018 Race for FH. I’m racing in memory of my father, who lost his lifelong battle with FH in 2017, but also in honor of my brother and sister, and my niece and nephew, who also live with FH. Even though my niece, Greer, and nephew, Patrick, are young (14 and 9), we can’t wait to … Read More

The post My Race for FH appeared first on The FH Foundation.

]]>
Race for FH. I’m racing in memory of my father, who lost his lifelong battle with FH in 2017, but also in honor of my brother and sister, and my niece and nephew, who also live with FH. Even though my niece, Greer, and nephew, Patrick, are young (14 and 9), we can’t wait to treat their FH. I want to help make physicians and healthcare workers aware of the importance of early intervention and treatment, and I want to encourage the continued innovation in medicine and treatment for FH. I want to help change the future for families like ours, and keep us free from heart disease.

I am racing for FH by completing a marathon (plus some!), one step at a time. In 2011, I had a heart attack while having a treadmill stress test done. This year, I will be walking on a treadmill for a marathon+ – I am going to walk 28 miles by September 24. The significance? I was 28 years old when I had my first bypass, and my dad was 28 when he had his first heart attack. Also, I want to try to do “a little bit more” than a marathon, as I was to do “a little bit more” to raise awareness for FH.

Please race with us. It just takes a few minutes to sign up. It is so important for us all to help expand the community of people who support the work of the FH Foundation, the way the FH Foundation has supported all of us.

#Race4FH #FHCantWait

Allison Jamison
FH Foundation Board Member & FH Advocate for Awareness

The post My Race for FH appeared first on The FH Foundation.

]]>
https://thefhfoundation.org/my-race-for-fh/feed 0
Not All Cardiac Rehab Programs Are Alike https://thefhfoundation.org/not-all-cardiac-rehab-programs-are-alike https://thefhfoundation.org/not-all-cardiac-rehab-programs-are-alike#respond Sat, 18 Aug 2018 18:24:40 +0000 https://thefhfoundation.org/?p=21599 Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease So, I am back in cardiac rehab – two years and 6 months after my surgery. It feels odd, and a bit tardy, but I only have so much energy to argue with my cardiologist. The reason he sent me back is because I still have shortness of breath, I still have a chest squeeze and a pronounced numbness … Read More

The post Not All Cardiac Rehab Programs Are Alike appeared first on The FH Foundation.

]]>
Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

So, I am back in cardiac rehab – two years and 6 months after my surgery. It feels odd, and a bit tardy, but I only have so much energy to argue with my cardiologist.

The reason he sent me back is because I still have shortness of breath, I still have a chest squeeze and a pronounced numbness in my left arm, shoulder blade, and collar bone when I exercise even “a little bit”. Or whatever they consider a little bit. He doesn’t think this is valve related, although the On-X mechanical valve I have is leaking a little bit. But not enough to make a difference in symptoms, he says. But enough to cause my large gap between my systolic and diastolic BP. He sent me back because he thinks the symptoms come from the fact that my smaller arteries are still clogged up with cholesterol (because of my FH) and my heart won’t grow new vascularization unless it’s very active. Since I am limited by my symptoms, I cannot exercise enough to grow new blood vessels, therefore the need for cardiac rehab, to recondition my heart and also monitor what it’s going on when I do exercise.

And this is where the disconnect happens. I have just ended my first week in rehab (the second time around, like I said). This time it’s a different state, facility, medical system than before and it is by leaps and bounds different from how my first experience was. This time, it feels like just going to a gym all by myself, with the only difference being that there are spectators around me watching my exercise. But that is all they are doing. Almost.

They do take our blood pressure when we walk in and when we walk out – and we need to record it in our folder ourselves. But they don’t take our blood pressure as we exercise (they did the first time I was in rehab – several times, in fact).

We do wear a monitor that we hook up to our chests ourselves when we walk in (I pray every time that I do it right, but who knows?!). And they tell us that our heart “looks fine” because the monitor talks to their computer during our exercise. They said they would tell us to stop exercising if they see any EKG modifications. But it’s like 10 of us and one nurse looking at the monitor and doing 10 other things, so I am not sure how they would be able to catch the modifications as they happen. She doesn’t seem too focused. When I first went, we had an assigned person who would monitor just us the whole time we were exercising.

We have to pick our own machine that we want to exercise on, and we need to use that machine (treadmill, two kinds of bikes, elliptical machine) for 45 minutes. How fast, or steep we go is our call, but they do want us to reach our “maximum heart rates” which they base on our weight-height-age. After 45 minutes, we all go to the strengthening and relaxation room and exercise in a group as we all follow the physiologist in strengthening exercises for 20 minutes before we slow down during the relaxation time, which is roughly 10 minutes (that is a total of an hour and 15 minutes, if you didn’t count).

During this whole time, you have to write down in your folder your own numbers: how fast you walked on the treadmill, your speed, your length of time and your RPE (Rate of Perceived Exertion) – in other words “how strenuous” you think your exercise was. They only take your blood pressure when you walk in and when you walk out, so when you are rested. They tell you what the highest heart rate was during your cardio exercises and you write that yourself in your folder. They ask you to take your own pulse at the end and record it in your folder (thank you, Apple watch! – almost everyone in the room is counting theirs themselves).

This was all done for me by the physiologist, and my blood pressure was taken 3-4 times during the cardio exercising the first time I was in rehab.

This past week, the physiologist I worked with the first day said there “is no need for them to take my blood pressure during my exercising, because by looking at my history she does not expect my blood pressure to drop.” She said that she expects it to rise with exercise, which is perfectly normal, but not drop. I was dubious, so dubious that I was speechless and didn’t argue that nor told her about my jumping blood pressure for no reason at all. I also did not tell her about the regular huge gap between the BP numbers (which is my number one concern) and which I would like to see/ understand whether it can be cleared by exercise.

The second day I went in, the second physiologist asked me if I have questions and I told him that I was not expecting to be monitored so little in a program that is branded as a highly medically assisted one. I told him that the first time I was in rehab, my blood pressure was monitored closely and the numbers were not good, but they did show that my heart is not happy when it’s pushed too far. I also told him that my cardiologist told me they would do a stress test before I would even start rehab so they’ll know my limits, rather than tell me what my limits are based on my weight, height, and age. Given the condition of my heart, my limits should be lower. They never did a stress test before I started this. They said, however, that they based my limit on the stress test my cardiologist did in March (5 months ago). But even that one was different than the one they had done in December last year (9 months ago), so my heart is always changing, it seems. Don’t they want to know what it’s doing now?! Apparently not.

He apologized hurriedly and he said “oh, we can do the stress test any time during the program, no big deal.” But for now, he said, let’s try to get your heart rate at least above 90 (my goal was 119, apparently, based on the last stress test they had access to see, but he wanted it at least above 90 given that the first day I was there it was only 86). Although I did put an RPE of 9 the first day when I exercised on the bike, indicating that I was very tired and breathless during that day, had my chest squeeze, he still wanted me to do more the second day.

So, I tried. I also told him one of my biggest concerns is my blood pressure and I am surprised that they do not monitor it during my cardio. He said he will monitor it that day closely. So, with me pushing myself and him taking my pressure, off I went.

My blood pressure climbed up to 155 over 55 (yes, the diastolic is always that far from the first number), and at that point I was out of breath completely. He said I was not at 90 yet, I was still at 86. I told him it’s hard to really make my heart rate go really high because I am on atenolol, too, which is designed to keep the rate low. He then eased up and let me slow down. OK. Now, they got what they wanted: they stressed my heart out enough that I was a 10 on the RPE scale. My rate was 89!!

My left arm, shoulder blade, and collar bone were completely numb at this point – this is when he was really sold that I should slow down. And then, all of a sudden I started feeling very dizzy, very light headed and like I was going to faint. He took the blood pressure again, it was 142 over 50. Two minutes later, if that, he took it again: it was 106 over 34! So, in like 5 minutes, it went from 155 over 55 to 106 over 34. I thought I was going to faint!

They asked me if I should take a nitroglycerin, and I told them that usually I just wait it out and all this discomfort goes away on its own – so they left me be.

I didn’t do the strengthening exercises that day. I just got some water and waited for my balance to come back so I can drive back home. I felt horrible the entire rest of the day.

The third day I went back, I took it very slow: my heart rate went up only to 79 (it is usually between 54-60 when I walk in), and I did reach an RPE of 7 on that third day, so I exercised within my own comfort level. I do not want to try to reach their weird goals because those are not MY goals! I know I am not a doctor, but I feel like my heart will never be an athlete’s heart – this is not out of laziness and hypochondria, but it is out of being in touch with my body and knowing what it can and cannot do.

I still believe a stress test would have given them a more accurate picture of where I am today. Now. I flunk every test they give me – they all have a goal and I come way under that goal but my symptoms start way before I am anywhere near that goal. And when I do exercise, normally, on my own, I never push myself as hard as they always push me on the treadmill of a stress test (my goal for my age/ weight/ etc is 150 BPM – I have never been able to reach that). And even with me not pushing that hard, the symptoms are there.

It was the first time in rehab that they diagnosed my weird BP, and when they found that sometimes my MAP (Mean Arterial Pressure) is too low. And when this happened, I would start seeing symptoms, too – so the symptoms were heart related. This time, no one else in the room gets their blood pressure measured during their exercise till they actually can no longer do what they are doing. Definitely a different approach, maybe not as proactive as the first crew I was exposed to.

So, not so sure about this second go-around of rehab. I feel like they are not monitoring us closely enough to really understand each of our needs – had I not spoken to the second physiologist, they would have never found out about my jumping BP during exercise because the first person said “there is no concern that it would ever drop.” Now, he said (promised, even) that he would take it during my exercise every time I go in. He did tell me he would push me harder as time goes by but honestly, after the episode I had this week I wonder if that’s even safe. Maybe the limitations in my heart will never get it working as hard as the doctors need it to work for the blood vessels to grow again, or the circulation to improve?!

I used to encourage people about going to rehab, because my first experience there was really good; it really gave me the confidence I needed after a very involved surgery that my heart CAN and will get stronger again. But now I understand why some people saw no value in theirs – because every place is different and some places are really not working with you to understand, explain, and monitor you so you know what is happening with your heart. Some places are really just a gym with heart monitors. But those who know me know that I’d rather know more than less.

All I can say is: always speak for yourself. If something does seem off, speak up, ask questions, be curious, know your numbers, challenge them – they owe you at least an explanation, even if they’re not willing or able to make a change. At least that. Much health to all!

To view original post visit:
http://livingwithfh.blogspot.com/2018/08/not-all-cardiac-rehab-programs-are-alike.html

Blog Post by A.W.

About this Blog

In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.

The post Not All Cardiac Rehab Programs Are Alike appeared first on The FH Foundation.

]]>
https://thefhfoundation.org/not-all-cardiac-rehab-programs-are-alike/feed 0
The 2018 Race for FH Has Begun https://thefhfoundation.org/the-2018-race-for-fh-has-begun https://thefhfoundation.org/the-2018-race-for-fh-has-begun#respond Wed, 15 Aug 2018 18:09:38 +0000 https://thefhfoundation.org/?p=21569 The FH Foundation’s unique “Do-It-Yourself” fundraising “race” kicked off on August 11 and will cross the finish line on September 24 – FH Awareness Day. People across the country are choosing their own physical challenge and are raising funds to ensure that those with FH have longer, healthier lives. Will you join us? The FH Foundation held its first Race for FH in 2017. One of our primary goals was … Read More

The post The 2018 Race for FH Has Begun appeared first on The FH Foundation.

]]>
The FH Foundation’s unique “Do-It-Yourself” fundraising “race” kicked off on August 11 and will cross the finish line on September 24 – FH Awareness Day. People across the country are choosing their own physical challenge and are raising funds to ensure that those with FH have longer, healthier lives. Will you join us?

The FH Foundation held its first Race for FH in 2017. One of our primary goals was to give people who are concerned about FH a way to take action and have impact on how FH is diagnosed and treated.

Members of the FH community including those with FH, their family members, clinical partners and concerned individuals are spread out across the country. We wanted to make it possible for anyone to participate, regardless of where they live. What’s more, people like to be physically active in a number of ways, and we wanted to encourage their diverse interests as well. That’s how we came up with a “Do-It-Yourself” event.

People embraced the idea and challenged themselves in more ways than we could have imagined. One racer competed in an Iron Man, one family surfed every day in September, an FH Advocate for Awareness ran her first 5K and invited others to join her, another supporter swam the Charles River. One family simply raised money in memory of their father who had passed away earlier in the year.

They all shared their stories on the Race for FH website and on social media. Many were new to raising money for the FH Foundation, and weren’t sure what to expect. The response they received was inspiring. People appreciated being asked to help make a difference and were happy to make a gift. Thanks to enthusiastic racers and generous donors, we raised nearly $88,000 to increase awareness of FH and save lives. You can help us raise $150,000 this year to continue our work on behalf of people with FH everywhere.

Can we count on you?

You can register today at www.thefhfoundation.org/race-for-fh. The FH Foundation works every day on behalf of people with FH, but we need your help to win the Race for FH. Thanks for joining us.

The post The 2018 Race for FH Has Begun appeared first on The FH Foundation.

]]>
https://thefhfoundation.org/the-2018-race-for-fh-has-begun/feed 0
Easiest Praluent Refill Approval in History https://thefhfoundation.org/easiest-praluent-refill-approval-in-history https://thefhfoundation.org/easiest-praluent-refill-approval-in-history#respond Sat, 11 Aug 2018 16:29:04 +0000 https://thefhfoundation.org/?p=21547 Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease Caveat: this is not the norm! I have talked about this before (https://livingwithfh.blogspot.com/2017/04/a-helpful-health-insurance-alas-there.html), and as anyone taking Praluent or Repatha knows: ordering a new prescription or even a refill can be a pain in the rear-end. You always get denied by the insurance, always turned around, even when you know your reasoning for asking for these drugs is legitimate. … Read More

The post Easiest Praluent Refill Approval in History appeared first on The FH Foundation.

]]>
Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

Caveat: this is not the norm!

I have talked about this before (https://livingwithfh.blogspot.com/2017/04/a-helpful-health-insurance-alas-there.html), and as anyone taking Praluent or Repatha knows: ordering a new prescription or even a refill can be a pain in the rear-end. You always get denied by the insurance, always turned around, even when you know your reasoning for asking for these drugs is legitimate. They don’t seem to care. It’s not the first time when you realize that health insurance companies are not in the business of saving lives, but in that of making money. Pretty much a platitude, right?!

So, when it was time for me this month to renew my Praluent (this would have been my third renewal), I started an online journal. I wrote down the name of every person I talked to at the insurance company, at the specialty pharmacy, at my doctor’s office and I was prepared to document every step of the way so I can show someone, anyone, where the process seemed to have been broken, should I be denied.

I took very detailed notes. I talked to the insurance first. They told me they cannot, by law, call my doctor; that they make up the list of questions / reasons for which I should be on Praluent, and that I have to call my doctor myself and have them write up this note with all the reasons that are approved by the insurance of why I should be on it. Then, the doctor has to fax this note to the insurance company. Then, the doctor has to also call the specialty pharmacy. When the pharmacy gets the call from the doctor that I was prescribed this drug, they cannot fill it unless the insurance approves that prescription. So, the pharmacy would call the insurance and the insurance would have had the questionnaire filled out from the doctor’s office and would give them the OK (based on what the doctor answered) to fill the prescription. Or … they would deny refilling it.

If your head hurts, it should. The process is a spiderweb of convoluted bureaucratic loose ends and it is not designed for ease of access.

This year, I am also in a new state, and have a new cardiologist who is not the cardiologist that originally prescribed Praluent to me, two years ago. So, I was doubly nervous: I had to renew my prescription (so, renew, after originally having been approved) twice before and I was denied several times before during the renewal process. I knew this time would not be any different. Plus, not really being familiar with the staff of my new cardiologist, I was even more nervous that I would get denied so many times, an appeal would not even be possible anymore.

But sometimes, by the grace of Karma, or God, who knows?!, our worst fears are not met. I went to my new doctor and explained the maze to him. He smiled and told me to not worry about it, that the process has become easier over the years and a renewal is much easier than ordering a new prescription. I was dubious. I gave him the list of questions that the insurance needed answers for with the fax number for my insurance. Then, I gave him the phone number of the specialty pharmacy saying that I needed him to order the drug from the pharmacy. I was so scared he might get the two numbers confused: the insurance needed the questions answered and the pharmacy needed the prescription. And I talked to the doctor, but I know he is not the one actually doing all this, that his assistant or nurse might do this and between me telling him and him telling her what is needed something might get lost.

When it was time for my normal refill, I called the pharmacy to see if they had received a call from the doctor yet and could they please call the insurance for the OK. When I called them they said they did receive the call from the doctor and they also received the OK from the insurance and if I wanted, they could send me the new refill in a couple of days. I asked them, still dubious, how many refills I had with the newly renewed prescription, and they said 11 – that the new prescription is valid for the whole new year. I was in awe! This had to be the easiest Praluent refill in the history of Praluent.

To the time I write this, I am still not sure what changed: either my new doctor has had more experience with ordering these drugs than my previous one and he did tick all the possible boxes requested, or the health insurance/ specialty pharmacy business has gotten a little bit less rigid? Not sure.

The couple of things I made sure that my new doctor had were:

  • the results of my genetic test that shows I have HoFH
  • the total Cholesterol and LDL Cholesterol numbers from before I started Praluent and the levels I am at now
  • my history of CAD and heart surgery.
Hopefully that’s all they needed and what he sent in. Like I said: not sure what worked, but I am grateful it went well.

Now, the next big bump is renewing my benefits later this year: I am hoping that my employer will continue using the same insurance as we have now. Changing insurance companies at the end of this year would mean starting this process over with another company – and that, I know, and my doctor agreed, is much harder. Hoping for consistency going forward!

Good luck to all who are going through this process! These drugs have been a real live saver for me!

To view original post visit:
http://livingwithfh.blogspot.com/2018/08/easiest-praluent-refill-approval-in.html

Blog Post by A.W.

About this Blog

In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.

The post Easiest Praluent Refill Approval in History appeared first on The FH Foundation.

]]>
https://thefhfoundation.org/easiest-praluent-refill-approval-in-history/feed 0
The FH Foundation Announces Consensus Statement on Genetic Testing for Familial Hypercholesterolemia (FH) https://thefhfoundation.org/fhf-announces-gt-consensus-statement-for-fh https://thefhfoundation.org/fhf-announces-gt-consensus-statement-for-fh#respond Mon, 30 Jul 2018 23:58:42 +0000 https://thefhfoundation.org/?p=21188 The FH Foundation is pleased to announce that the Journal of the American College of Cardiology has just published a consensus statement on the application of genetic testing in diagnosing familial hypercholesterolemia (FH). A culmination of a two-year effort led by the FH Foundation and authored by an international panel of 30 cardiovascular, lipid, genetics and advocacy experts, the statement recommends that genetic testing be offered to diagnose both individuals … Read More

The post The FH Foundation Announces Consensus Statement on Genetic Testing for Familial Hypercholesterolemia (FH) appeared first on The FH Foundation.

]]>

The FH Foundation is pleased to announce that the Journal of the American College of Cardiology has just published a consensus statement on the application of genetic testing in diagnosing familial hypercholesterolemia (FH). A culmination of a two-year effort led by the FH Foundation and authored by an international panel of 30 cardiovascular, lipid, genetics and advocacy experts, the statement recommends that genetic testing be offered to diagnose both individuals with FH and their relatives.

 

Lack of an accurate FH diagnosis is a pressing public health concern – leaving over 30 million people worldwide at great risk for early heart disease. Genetic testing can accelerate the identification of these individuals and enable the earlier initiation of therapies.

 

Although FH can be diagnosed clinically, there are additional benefits of genetic testing. Studies show that individuals who receive genetic testing are more likely to initiate therapy, more likely to stay on therapy, and over time, have lower LDL levels. Genetic testing can also provide important information to inform risk and prognosis and influence the choice of potential therapies.

 

Importantly, genetic testing can improve our ability to screen potentially affected family members. If we can identify a genetic variant in a family, that variant can then be screened for in other family members. The earlier we identify FH individuals and intervene, the more likely it is we can prevent them from developing heart disease, even beginning treatment in childhood.

 

Genetic testing isn’t without its limitations. Today, we only understand part of the genetics behind FH. We would expect a genetic test to be positive in 60-80% of those with clinically defined FH. That means up to 30-40% of individuals with FH will not have a positive genetic test.

 

In addition, the statement recommends that all individuals receive pre- and post- genetic counseling, which will outline the benefits and limitations of genetic testing. Genetic counselors and physicians ordering genetic tests should ensure their patients have considered the potential impact of this information on one’s ability to obtain life and long-term care insurance, especially when children are being tested. As the field of genomics continues to offer more opportunities to prevent disease and death, we need to advocate on behalf of all individual who seek to understand their risk for genetic conditions.

 

Why Genetic Test?

The FH Foundation explains why we led the international effort to develop recommendations for the application of genetic testing in FH.

WATCH VIDEO

Consensus Statement

Read the entire “Clinical Genetic Testing for Familial Hypercholesterolemia” statement online.

READ STATEMENT

Genetic Testing FAQ

We have added background on genetic testing, benefits and limitations, and answered frequently asked questions on our Web site.

LEARN MORE

Importance of Genetic Counseling

The consensus statement recommends both pre- and post- genetic counseling so that individuals understand both the benefits and limitations of genetic testing. Hear about the important role that genetic counselors play.

WATCH VIDEO

Where do we go from here?


Genetic testing is complicated and to date, policy has not caught up with the science. As genetics and technology evolve, it is critical we work together to ensure that individuals with FH and their family members are protected from discrimination.

 

While the Genetic Information Non-discrimination Act (GINA) protects most people from discrimination when it comes to employment or health insurance coverage, it does not protect everyone or address other kinds of insurance, such as life, disability, or long-term care insurance. It is important that individuals weigh all of these considerations prior to getting genetic testing.

 

The FH Foundation firmly believes that individuals with FH and other genetic conditions should not be penalized for obtaining genetic health information that could result in better treatment and outcomes. Prevention of early heart disease through the application of tools such as genetic testing for FH must be a priority.

 

In January, the FH Foundation visited Capitol Hill with 30 advocates to ensure that the protections from GINA are secure in employee wellness programs. We will continue to advocate for further protections for insurance.

 

GET INVOLVED

 

Thank you to the authors, expert panel, donors, advocates and supporters, CASCADE FH Registry sites and participants for making this work possible!    
The FH Foundation is dedicated to continuing the critical work needed to raise awareness and save lives by increasing the rate of early diagnosis and encouraging proactive treatment. Support our work by making a tax-deductible donation today.

       

The post The FH Foundation Announces Consensus Statement on Genetic Testing for Familial Hypercholesterolemia (FH) appeared first on The FH Foundation.

]]>
https://thefhfoundation.org/fhf-announces-gt-consensus-statement-for-fh/feed 0