BENEFITING: FAMILIAL HYPERCHOLESTEROLEMIA FOUNDATION
As you all know, this past December Avery was diagnosed with a very rare form of FH called Homozygous Familial Hypercholesterolemia (HoFH). When we began scouring the Internet for information about her disease, the FH Foundation was one of the first, and by far the best, sources of information about FH we found. Because Jason and I feel so strongly about the work this organization is doing, and to help in their quest to raise awareness, we recently became FH Foundation Advocates. The FH Foundation is working to raise awareness so that more people with FH are diagnosed and treated while they still have a fighting chance to prevent heart disease in their family. The Foundation is educating people and saving lives. Unfortunately, as many as 90% of people with FH still have no idea they have it.
Avery has been a real trooper the past six months....many doctors appointments and tests, being poked and prodded, and has never once complained. Currently, we're in the process of setting up surgery to have a port placed in her chest to allow biweekly access for LDL Apheresis treatments and are trying to get her into a drug trial (in addition to the meds she already takes for this). A lifetime of exposure to very high cholesterol can lead to early heart attacks. At six, Avery already has mild aortic stenosis which needs to be monitored closely. But this is just the beginning. This doesn't get better or go away. This is our life now.
If you have very high cholesterol and a family history of early cardiovascular disease, ask your doctor if it could be FH. Don't wait for them to bring it up. FH is treatable, but it is important to diagnose it early. If you have FH, your children could have inherited it from you. Be sure to have their cholesterol levels checked so that you can start preventing heart disease today!!
Sadly, a fellow FH Advocate passed away the weekend of May 1st from a heart attack (his first) at the age of 42. His name was Jason Matsui and like Avery, he also had HoFH. This fundraiser is also dedicated to him.
We are raising funds for the FH Foundation to support them in their mission to spread awareness of Familial Hypercholesterolemia. Early diagnosis saves lives and we want everyone with FH to benefit, as we have. If we have been a good friend, made you smile or taught you something, consider donating to this cause which means so much to us. Thank you for your support!
Learn more at www.thefhfoundation.org
Donations are tax deductible.