When you learn your child has an illness, your initial parental instinct is to make it better. When I learned Avery had HoFH, I’ll admit, for whatever reason, I didn’t immediately delve into how to make it better. I knew I couldn’t. We immediately made changes in the foods we purchased and ate, but I put off actually researching the disease. Part of me knew it was serious, but was in denial. The other part of me knew it was serious but had no idea just how serious. Until I began doing research.
Then the real frustration began. I began where everyone in the modern age begins — with a Google search. I typed in “homozygous familial hypercholesterolemia“. Up pops 145,000 results. Ok, good, that’s promising. Very quickly I noticed that unlike most things you type into a Google search bar which have pages and pages of websites for you to peruse, the initial pages that popped up in my search were websites citing papers and research written by doctors for doctors. Research papers written for medical journals, often which the general public doesn’t have access to, and even when they do have access, much of the information is written for the intended audience of doctors, not the common person. There were pages citing the newest research, treatment recommendations and articles on the newest drugs to treat HoFH written by pharmaceutical companies, again oftentimes written for the medical community, not the common person. There were a few of the usual consumer websites (emedicine, wikipedia, etc) mixed in which do provide some general information, but not a whole lot. Overwhelmingly there were very few results written for the general public in language we can easily understand. Thankfully, I did stumble on one website, the FH Foundation (www.thefhfoundation.org), written for the patient or caregiver of those with FH or HoFH. Let me repeat that. One website. I’m not saying there aren’t other good sites out there. But as of now, I haven’t found them.
For anyone dealing with the diagnosis of FH or HoFH, let me say, the FH Foundation has been an invaluable resource. Much of the information you need to gain a basic understanding of these diseases can be found on their website. If you want to know what all these terms your doctors are using mean, check out their Glossary of Terms. Want a list of resources? Check out their Resources page. There is also a Facebook group to compliment the website and provide a community for those living with FH and HoFH to share their experiences, get support and ask questions. The few Facebook pages I have found (see Resources tab), along with the people there, have been some of the most help to us since learning of Avery’s diagnosis. Go check them out!
Avery's Fight 