Today, February 29, is designated as rare disease day. As most of you know last year I was diagnosed with a rare type of cancer called Erdheim Chester Disease. I am unfortunate enough to be one of 304 people in the world with this rare disease. Sadly, there are hundreds of rare diseases and thousands of people who suffer from them. So, what does it mean to have a rare disease? It means finding a doctor who has ever heard of your disease, much less understanding what it is, is almost as rare as the rare disease. It also means, once you find a doctor that understands your disease, and you travel hundreds of miles to see him/her, and they prescribe you a treatment, you then have to go to war with the insurance companies to pay for your treatment because nothing is FDA approved for this disease. Then, the treatment itself is trial/experimental treatment because there isn’t sufficient research on how to fully treat the disease.
So, why am I telling you about all of this? Because you can help. You can help in three ways. First of all you can help make people aware of this disease. My doctor believes many more people has ECD, unfortunately, so few people in the medical field know about it that patients who suffer with this rare disease are either being misdiagnosed or not diagnosed at all. Secondly, you can give financially by going to the link below. Giving financially, helps spread awareness about this disease. It also helps provide the necessary funds for proper research so medical professionals are better equipped to treat this awful disease. The third way you can help is to pray. Pray for the people who suffer from this debilitating and deadly disease. Also, pray for the caregivers who spend countless hours taking care of their loved ones. My prayer is that one day soon there will be a cure. Until then we keep pressing forward.
Thank you and please share.