The FH Foundation https://thefhfoundation.org Tue, 18 Sep 2018 22:10:10 +0000 en-US hourly 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

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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

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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

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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.

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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

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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.

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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

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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.

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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

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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.

       

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Dr. Samuel Gidding Joins the FH Foundation as Chief Medical Officer https://thefhfoundation.org/dr-samuel-gidding-joins-the-fh-foundation-as-chief-medical-officer https://thefhfoundation.org/dr-samuel-gidding-joins-the-fh-foundation-as-chief-medical-officer#respond Fri, 20 Jul 2018 12:51:37 +0000 https://thefhfoundation.org/?p=20768 The FH Foundation, a global research and advocacy organization, today announced that Dr. Samuel Gidding will join as chief medical officer. Dr. Gidding brings more than 30 years of experience in preventative cardiology, pediatric cardiology and heart failure/transplantation with a strong focus in familial hypercholesterolemia (FH), most recently serving as division head of pediatric cardiology at Nemours Cardiac Center and A. I. DuPont Hospital for Children, and professor of pediatrics … Read More

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The FH Foundation, a global research and advocacy organization, today announced that Dr. Samuel Gidding will join as chief medical officer. Dr. Gidding brings more than 30 years of experience in preventative cardiology, pediatric cardiology and heart failure/transplantation with a strong focus in familial hypercholesterolemia (FH), most recently serving as division head of pediatric cardiology at Nemours Cardiac Center and A. I. DuPont Hospital for Children, and professor of pediatrics at Thomas Jefferson University.

 

“As the scale and scope of the FH Foundation’s national and international portfolio of work grows, we are pleased to have Dr. Gidding join the leadership team of the FH Foundation as our Chief Medical Officer,” said Katherine Wilemon, founder and CEO of the FH Foundation. “Dr. Gidding’s extensive expertise as a pediatric cardiologist and scientist, as well as his deep understanding of FH as a family condition, will contribute greatly to the FH Foundation’s research, advocacy, and community programs.”

 

“FH is a pressing public health concern, leaving 1 in 220 individuals at tremendous risk of early heart disease,” Dr. Gidding said. “The FH Foundation has been a catalyzing force to drive both clinical practice guidelines and the implementation of novel precision medicine approaches to ensure the early identification and treatment of individuals with FH. By building upon these efforts, we have the opportunity to change the trajectory of heart disease in the U.S. and worldwide.”


Dr. Gidding has practiced pediatric and preventive cardiology for the Nemours Cardiac Center for the past 18 years. He has led and designed clinical trials that span statin interventions in adolescents, PCSK9 inhibitors, diabetes, early imaging of atherosclerosis and cardiovascular morbidity of obesity. Dr. Gidding founded The Pediatric Atherosclerosis Prevention and Lipidology (PeDAL), a consortium dedicated to prevention of adult onset lipid related diseases beginning in youth. He has developed clinical practice guidelines and scientific statements on familial hypercholesterolemia, hypertension, tobacco, obesity, nutrition, diabetes, and congenital heart disease for AHA, AAP, NHLBI, WHO, CDC, EAS, NLA and ADA. He received his medical degree from the College of Medicine and Dentistry of NJ Rutgers Medical School and conducted additional training at University of Michigan and SUNY-Upstate.

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Genetic Testing: A Wake Up Call https://thefhfoundation.org/genetic-testing-a-wake-up-call https://thefhfoundation.org/genetic-testing-a-wake-up-call#respond Thu, 12 Jul 2018 16:50:31 +0000 https://thefhfoundation.org/?p=20330 By Kari Roundy I first met my FH Specialist, Dr. Seth Baum, in Jan 2016, at the urging of my primary care doctor. I’m so glad I did. Earlier in my life, I had not taken my cholesterol levels seriously. I believed I could manage my high LDL cholesterol with diet alone and I avoided taking medication. I wish I had invested in my own health by seeking Dr. Baum … Read More

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By Kari Roundy

I first met my FH Specialist, Dr. Seth Baum, in Jan 2016, at the urging of my primary care doctor. I’m so glad I did.

Earlier in my life, I had not taken my cholesterol levels seriously. I believed I could manage my high LDL cholesterol with diet alone and I avoided taking medication. I wish I had invested in my own health by seeking Dr. Baum out earlier – but finding him when I did has make all the difference to my FH management.

Our first meeting was to discuss my lab results and get to know each other. My LDL cholesterol and my Lipoprotein(a), also known as Lp(a), were shockingly high at te time. Dr. Baum suggested I get genetically tested to confirm the diagnosis of familial hypercholesterolemia. I immediately agreed to the genetic testing, had his nurses take my blood, urine, and saliva, and they sent it all off to the lab.

I wanted to know about all my genetic risks for disease. I dove in with faith that it would all work out and that I might contribute to research by having my genetic data collected.*

After about one month, the results came back showing both the FH and the Lp(a) mutations. This was the motivation I needed. Knowing my genetics made me “wake up” to the fact that I had to treat my lipids.

I am so grateful that there are multiple treatments available for FH, and more in clinical trials. I now treat my high LDL cholesterol with a combination of statin and a PCSK9 inhibitor. Because I know I have both high Lp(a) and FH, I have joined a Phase II Clinical Trial to lower Lp(a). I am hopeful for the future, now that I have taken control of my health and I have a great doctor to guide my care.

Genetic testing was a wake up call for me – it helped to motivate me to take my medication and give me confidence in my diagnosis.

If you’re interested in genetic testing, I would seek out a doctor or genetic counselor who knows how to communicate the results to you. It was worth it for me.

*Editors note: not all genetic testing results contribute to medical research. It is important to discuss test and result options with a healthcare provider or genetic counselor.

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Then and Now. A Path to Recovery https://thefhfoundation.org/then-and-now-a-path-to-recovery https://thefhfoundation.org/then-and-now-a-path-to-recovery#respond Sun, 08 Jul 2018 08:00:04 +0000 https://thefhfoundation.org/?p=20317 Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease I have been pondering upon life and the resilience we have, the stubbornness we have come equipped with from birth to embrace it. To fight on. To stay on the path of making ourselves stronger and to live. This piece is for all the people out there who are just now finding out they have to have surgery, or … Read More

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Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease

I have been pondering upon life and the resilience we have, the stubbornness we have come equipped with from birth to embrace it. To fight on. To stay on the path of making ourselves stronger and to live.

This piece is for all the people out there who are just now finding out they have to have surgery, or for those who are about to walk into the pre-op appointment tomorrow and are wondering how will they ever come out of this daunting experience. And also for those who have put the surgery behind them but are now going through the hard first days and weeks of finding their new normal. This is also for everyone who, I know, can relate. This is for you all.

I was thinking recently about what all happened to me in early 2016 when I had my surgery. I walked into that hospital in Utah on my own two legs. I was rolled into the anesthesia room at around 7 AM with a smile on my face. They gave me that first (I think) IV shot of whatever … and I slipped away into the big slumber (I think, as I cannot remember anything till the next day around 2 AM when I woke up in the ICU with what seemed like a whole army of nurses around me).

I was thinking the other day about what all happened to my body in those hours, and it made me stop in my tracks. This really did happen. They took me to the OR and they stopped my heart. They cut my chest open, then my heart open (I think). They sunk me in buckets and buckets of ice to “freeze” me during the circulatory arrest procedure they had to do to trick my brain that it did not need that much oxygen to survive. They put me on this machine that pumped the blood and breathed for me for many hours. They removed my aortic valve, and then they removed my ascending aorta. At this point, there was no life-giving blood flowing through my arteries. Only some flowing through my veins, tricking my brain that it was OK not to breathe.

They replaced my aorta with a man-made graft and did the same for my aortic valve and root. They “cleaned out” (cut into the walls and removed the bad tissue of) my aortic arch which was thick with plaque. They “un-froze” me next and then started working on my by-passes. They removed veins from my left leg and sewed them onto my heart and did the same thing with the arteries from my chest – to bypass sick arteries. Somehow, through another big miracle, after they stopped the heart and lung machine my heart jolted itself on its own back into beating and making me a whole person again. Later on, my lungs started breathing on their own.

In essence, I was dead, really, if that machine would have stopped and the three surgeons, one anesthesiologist, one “heart-and-lung machine guy” (as my surgeon called him), three PAs and the army of nurses and other staff would have walked away on me. But they didn’t. And I was breathing on my own by the time my husband saw me, in the middle of the night, and then when he left to go home.

When I got home from the hospital, after having a heart attack while in the hospital, 8 days after the surgery, I could not do a lot of things that are routine for any normally functioning human being. I could not open doors that were too heavy, including my refrigerator door. I could not tie my own shoes – I could not bend over at all. I could not clip my nails, because of the neuropathy in my fingers. I could not put on my socks. I took them off with my other foot. I could not wear a seat belt nor carry my purse on my shoulder or on my back. I could not wear a bra. I did not sleep on my back or my side; I slept sitting up for six months. After three months of medical leave, I went to work pulling a dolly that carried my purse and my lunch bag. I snuck into the building and in offices behind someone that would open the large, very heavy doors for me. I learned pretty fast where all the doors that let you push them open, rather than pull are, because I was afraid my chest would pop open if I struggled to open them myself.

Most of all. I was tired a lot. I was tired even after not doing anything at all. I was drained. I did not sleep well, but I watched a lot of TV, spent a lot of time on social media, and read a lot. I was not able to even cook, as a pot of water was too heavy to carry. I just rested. A lot. Well, I laid there – it did not feel very restful at all.

I remember writing during those early days of recovery that I cannot imagine being normal again, traveling, going about my normal life. And someone, a kind soul, told me that then I was praying for “good hours, but in time they will become good days and later good weeks.” I was dubious. But those words turned out to be true.

In the past two years and almost 5 months, I slowly grew stronger, just like that kind person predicted for me (or rather shared from experience). I started taking trips by plane again after a year. I visited three countries and went on a cruise a year after the surgery. This year, I flew across the ocean and visited my family in Europe. I carried my carry-on and my heavy backpack during security check-ins and switching gates in several airports. I drove across the USA last year, all by myself, when we moved from Utah to North Carolina. I did wear a seat belt with no trouble then.

I just took my first trip alone for a week, for work. I packed my carry-on with clothes, shoes, toiletries and gifts for a week, and had again a very heavy backpack with my purse and computer in it. Carried them all on my body, and lifted the heavy carry-on above my head and put it in the overhead bin with no problem, not even a sweat. My husband and I just finished staining our screened-in patio a couple of weeks ago on a Saturday. We worked together, side by side. We did about the same amount of work, although he did most of the “up high” areas, and I did the floor and the lower areas. It was 95F and about 70% humidity that day, and about half of that day we were in direct sunlight. I did fine.

I remember I did not plant a garden the year of my surgery because I could not sit or bent over in the sun at that time. Sunny days (even with no humidity) tired me so easily. While staining my deck I was in awe at how much different, stronger, my body has become in just two years and a little bit … I never hoped I could come this far. And I am not perfect, and there are still things I am working on two years and five months later, but I know one day I will reach most of them, just like I did all these other milestones …

If I have learned anything from this experience is that we are strong. We are built to fight, and we should give ourselves and our bodies more credit than we are inclined to to begin with. Thinking back at all these things that happened to my body and knowing how I feel today fills me with humility and gratitude!

I wish everyone happy summers, strong recoveries (they can be only as fast as you are comfortable with), and the faith that one day you will be whole again. I am just one living example that that is possible …

Much health and … keep on ticking!

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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.

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Changing A Family History of Heart Disease, One Day at a Time https://thefhfoundation.org/changing-a-family-history-of-heart-disease-one-day-at-a-time https://thefhfoundation.org/changing-a-family-history-of-heart-disease-one-day-at-a-time#respond Tue, 19 Jun 2018 16:55:41 +0000 https://thefhfoundation.org/?p=20212 By Ray Shipman My story starts back when I was 14 years old. My 34-year old mother had her cholesterol tested during a physical. When the lipid panel came back, it showed that her cholesterol was over 500. The doctors notified her that her children should be tested. My cholesterol level came back high as well, at 384 total LDL-C. I was a very athletic teenager and I didn’t see … Read More

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By Ray Shipman My story starts back when I was 14 years old. My 34-year old mother had her cholesterol tested during a physical. When the lipid panel came back, it showed that her cholesterol was over 500. The doctors notified her that her children should be tested. My cholesterol level came back high as well, at 384 total LDL-C. I was a very athletic teenager and I didn’t see my mother making any life changes, so I thought that high cholesterol wasn’t that big of a deal.

Later, I learned that my grandmother had familial hypercholesterolemia (FH) and had died of a heart attack at 59. Around the same time, I started noticing my own mother’s health. She had coronary artery bypass grafting surgery in her late 30’s and a few years later had an aortic bypass. By this time the blockage had gotten so bad that it was in her legs, neck, and hands. She was in such pain, it was hard to watch her just try to walk. My mom passed away at 49 during an attempt to have another bypass surgery. She didn’t have any good veins to complete the bypass and passed away the next day in the hospital. Prior to surgery, the doctors had shared with her that it was possible she wouldn’t make it through the surgery, but she felt what she was going through was no way to live and had to try. I was 28 at the time. My mother’s two brothers have since passed away from FH. Both of them were in their early 50’s.

My whole life, I was told by my family that there was nothing I could do about my high cholesterol, and that this was just a genetic trait that I was going to have to live with. Through the years, I would go to the doctor and they would give me medications, but I never got the impression that it was a big deal. I watched my mother take a handful of pills daily with no success. I felt that it was a waste of time and the last thing I wanted was to be on medications. I felt that if I stayed fairly fit, I should be fine.

Understanding my FH Diagnosis
This brings me to today. I am now 43 and have always had FH in the back of my mind. I was scared that every time I had heartburn or a muscle pain in the chest, it was due to possible blockage. I was tired of worrying and wanted confirmation that I was okay. I went to the University of Washington Lipid Clinic Northwest in Seattle to see how I was doing. This was my big eye opener. The doctor sat me down told me, “The only thing you are doing right, is that you are sitting in my office right now.” She explained that medications were not an option for me – they were necessary and I am to never go off of them. My lipid panel came back with an LDL 322 and a total of 399. This is when I realized that being athletic and eating fairly healthy was not enough.

At this point, in addition to taking a statin, I started a complete lifestyle change and decided to take control of my FH.

My goal was to start eating healthy and exercise. This goal is both the easiest and the hardest at the same time. It didn’t require a doctor, a prescription, or anything fancy. I called this my “You Only” goal. The only person that was going to make this happen was me. To this day, I struggle with this goal but I push forward and take it one day and one meal at a time.

Connecting with the FH Community
I really wanted to get connected with other people who had FH. I got online and found the FH Foundation. I knew that this was what I was looking for and built up the courage to apply to become a volunteer FH Advocate for Awareness. I joined the training in Washington, DC in January 2018 and now I represent the FH Foundation to raise awareness of FH.

I was worried about the damage FH had done over the years and I wanted to know what I could do to find out if I had cardiovascular disease already. I didn’t know where to start, but at the FH Advocates Training I learned about a doctor at Oregon Health and Science University (OHSU), just 40 minutes from my home, who was active with the FH Foundation – Dr. Michael Shapiro. I knew right away he was the doctor I wanted to see.

The day of my first appointment with Dr. Shapiro was like no doctor’s visit I’ve ever had before. The FH Foundation had given me so much knowledge and confidence that I knew what I was going in for, I knew how to ask for it, and it was like the doctor and I were speaking the same language. I mentioned that I really would like to have an image of my heart to see how much calcium build up I had, I would like to be put on PCSK9 inhibitor, and that I was interested in being genetically tested for FH. He scheduled the CT scan that day, started the process to get approval for the PCSK9 inhibitor shots, and did a blood draw for my genetic test, all that day.

A Second Chance
I had the CT scan on my heart one week later. Dr. Shapiro prepared me by saying there was a chance the test would find some calcium build up and not to be too alarmed if it did. After the scan, the technician said the doctor should be contacting me in about a week. I left the office to take the 40 min drive home. On the way home I received a call from Dr. Shapiro’s office. My heart sank into my stomach. Why would the doctor be calling me so quickly right after my CT scan? I flashed back to memories of my mother. When my mom had her fist bypass surgery, she went in for a simple test and they rushed her in for an emergency heart surgery that day. I knew for certain that he was calling me back to the hospital because it was bad news, similar to what happened to my mom. My palms got sweaty, I was light headed, and I couldn’t even answer the phone. I let it go to voicemail. After gathering myself, I built up the courage to listen to the message. “Hello Ray. This is Dr. Shapiro. I am elated to tell you that your calcium score came back at zero! Congratulations!” I almost broke down right there. I felt like I was getting my second chance.

Two weeks later, Dr. Shapiro scheduled an appointment to go over the approval process for the PCSK9 inhibitor. After a lengthy question and answer process with the doctor and the pharmacist, the paperwork was ready to be submitted. One week later, I was approved for my PCSK9 inhibitor shots. I couldn’t believe it. I would finally have the chance to get my FH under control.

I just can’t express how much the FH Foundation means to me. They have connected me with some of the best care providers in the world. Meeting Dr. Shapiro has physically and mentally changed me. I know after one doctor’s visit that my heart is free of calcium, I’m prescribed some of the best medications on the market, and genetic testing has confirmed that I have the FH gene.

Taking control of my FH is so empowering. The only regret that I have is that I didn’t do this all sooner.

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Don’t Leave it to the Coroner https://thefhfoundation.org/dont-leave-it-to-the-coroner https://thefhfoundation.org/dont-leave-it-to-the-coroner#respond Mon, 04 Jun 2018 17:23:01 +0000 https://thefhfoundation.org/?p=19765 This week I heard about a young family who lost their husband and father, suddenly and right in front of their eyes. He had a massive heart attack and was gone. Sadly, working for the FH Foundation, I have heard this story too many times. It’s especially heartbreaking because we know that when heart disease is caused by Familial Hypercholesterolemia (FH), there is a lot we can do to prevent … Read More

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This week I heard about a young family who lost their husband and father, suddenly and right in front of their eyes. He had a massive heart attack and was gone. Sadly, working for the FH Foundation, I have heard this story too many times. It’s especially heartbreaking because we know that when heart disease is caused by Familial Hypercholesterolemia (FH), there is a lot we can do to prevent this devastating loss. We’re just not doing it.

It was the coroner who had to tell this man’s widow to have her children checked for FH.

Why did his doctor fail to convince him that he had a genetic disorder he could not control without medication? Why did the pediatrician fail to screen the children based on the family history? How can we find ourselves in a place where a coroner is delivering this vital medical guidance after it’s too late?

Doctors, don’t leave it to the coroner. Be proactive about finding FH in your practice and helping your patients to understand the risk they face and the opportunity they have to prevent heart disease for themselves, and their children.

There are many diseases and risk factors we are struggling to understand and for which we are desperate to find effective treatments. FH is not one of them. We know FH is a genetic disorder that causes very high LDL cholesterol from birth. We know high LDL cholesterol causes atherosclerosis and cardiovascular disease. We know that people with FH are at 20 times the lifetime risk for early heart disease. We know that high LDL cholesterol and a family history are red flags for FH. Most people have that information in their chart already. We have effective statin treatment we know can almost normalize the risk of early heart attacks and premature death. For those who need more help to lower their LDL cholesterol, we have combination therapy with ezetimibe and PCSK9 inhibitors. We have everything we need to fight FH.

We are simply failing to identify the 1 in 250 people who have inherited FH – 90% of those with FH remain undiagnosed.

Why? I’m at a loss for a good answer. I am baffled when I hear of a woman who has had cholesterol deposits on her eyelids removed several times by her dermatologist. When she asked what they were, he told her not to worry about it. My heart breaks for a mom and dad who have just learned their toddler has Homozygous FH caused by inheriting the gene from both parents. Why did their doctors not diagnose FH in the parents and explain the risk to their child? They have the right to this information so they can make their own, informed, decision when it comes to planning their family and protecting their children. I’m floored when I hear from women whose LDL cholesterol has always been in the 200s or 300s, whose doctors told them not to worry because they were protected by estrogen and a good HDL cholesterol number. I simply do not understand when I hear from men and women who have always known they have “off the charts” high LDL cholesterol and a family history, but never heard the words Familial Hypercholesterolemia until years after they had a heart attack or bypass surgery.

FH diagnosis matters. It is not enough to tell someone they have high cholesterol and prescribe a low-dose statin. They have to understand they have a genetic disorder that puts them at much higher risk for early heart attacks and death. They must understand how important it is to screen their children and other family members. And they must be treated aggressively enough and early enough in their lives to prevent heart disease before it’s too late.

The FH Foundation is working hard to raise awareness of FH, to drive FH research, develop tools to accelerate diagnosis, and advocate for access to better treatment. But, if doctors don’t use the tools they have in hand to proactively look for FH, ensure that their FH patients are well managed, and that their affected family members are screened, then we will see yet another generation suffer needlessly from the devastating effects of FH.

Doctors, the next time you see an adult with untreated LDL cholesterol over 190 mg/dL, a child with untreated LDL cholesterol over 160 mg/dL, or a young person in your ER or Cath Lab with a heart attack, talk to your patient about FH. Really ask them about their family history. Tell them they have to get their children’s cholesterol tested. Explain to them that FH is different, what the risks are, and what an incredible opportunity they have to prevent early, devastating, heart disease with the right treatment.

Don’t leave it to the coroner.

 

Cat Davis Ahmed is the Vice President for Policy and Outreach for the FH Foundation.  She and her family are impacted by familial hypercholesterolemia (FH).

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