Published: April 24, 2024

My story of living with HoFH

As we are approaching the first ever international HoFH Awareness Day (May 4th), we are delighted to share a story of Marwa Sadeek, an HoFH Patient and one of the active Ambassadors behind the awareness day campaign 

“Hi, I'm Marwa Sadeek. I'm 38, and I live in London, UK. I work as a medical interpreter and hold a degree in psychology. I have two beautiful girls, one is six years old, and the other is 12- years old.  I am a very keen tennis player and I enjoy reading whenever I get the chance, as when you have younger children you tend to run around with their hobbies rather than your hobbies.

I was diagnosed with HoFH (homozygous familial hypercholesterolaemia) when I was three years old. My mother noticed that I had symptoms on my eyelids, yellowish deposits. They ran tests in Great Ormond Street and that's when they officially diagnosed me with HoFH.

Straight away we started with medication and when I turned 9, we started with plasma exchange, which is very similar to LDL-apheresis and to this day I have this treatment.

Living with HoFH has its challenges and at every stage in life, I found the challenges are very similar. As a start, when I was in school, some schools didn't understand that I had to attend at least one day a week at the hospital to have my treatment, and that could affect my schoolwork.

As an adult finding a job and explaining to them that I have a certain medical condition, which is very rare can be hard, as not a lot of people are aware of what it is. When you say you have high cholesterol, a lot of the population has high cholesterol, but obviously, with HoFH it's much more serious. I had some of the managers gave me a very difficult time regarding taking time off work to attend my treatment, especially as well during my pregnancy when I had to attend extra appointments to make sure that I was okay through the pregnancy. My employee was not very happy with that.

Other than problems at work and school, you must understand that when you meet a potential partner, things might get serious. You have to explain your diagnosis and what impact it could have on family life. For example, when I met my partner, I explained to him that in order for us to have children or the possibility of having children, he had to be tested if he has FH because I don't want my children to, have HoFH. I know they will have FH, but if he does have the gene too, it means they will have HoFH.

So, it impacts on your personal life, your professional life. And as well, sometimes with friendships, you have to explain, that I have limited places to go eat. I need to make sure that the restaurant we go to has reasonably low-fat options that I can eat. And the problem is with HoFH, you could look absolutely fine physically. It doesn't show any physical symptoms unless it's quite bad. So, a lot of people tell you, but you look healthy. You're fine, you're slim, you're young. And that's because there isn't any awareness.

There is not much awareness of HoFH. It's not a known condition. Even in terms of getting medical insurance, they don't look at you as an individual case. As soon as you mention you have HoFH, you either get refused or the premium is extremely high. In my case, I am not a cardiac patient. I have high cholesterol. However, I have no cardiac problems, but unfortunately, there is no option to say, yes, I am HoFH, but I don't have any risk of, my risk of cardiac problems is quite low because I was diagnosed at a very young age.

My hope for the future of HoFH is that there will be some sort of testing for babies and early diagnosis. I can't push it enough or say it enough, the earlier the diagnosis the better outcome for a future with fewer cardiac problems. I'm a living example, I've been very lucky to be treated in the right hospitals with the right doctors and I have an amazing mother who actually fought for me to get to the right places.

I'm a mother of two I was always told that I would never be a mom with my condition. I am a miracle in a way, I hate to say it but what happened to me is a few years ago if you read about our condition we were told we wouldn't live you know over the age of 30, 40 and now with the new medication that's coming out with the technology that's happening in the medical field, I can dare to dream that I'll have a face full of wrinkles and white hair and I'll hopefully one day see my grandchildren. So please join us on the 4th of May to raise awareness of HoFH.”

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