A year ago, I did not think this date would ever affect us. February 28th: Rare Disease Day.
Sometimes life has a different plan for you….
Usher Syndrome is a rare disease, 400,000 people are affected by it worldwide. I struggled to find information about it myself, the hospital that diagnosed Jackson had no experience with it. It is still very painful for us as parents to have to explain to doctors, physicians, therapists and everybody who is involved in the wellbeing of our son what his condition exactly entails. Having to repeat the ugly details is not something I like to do on a daily basis.
One of the reasons I started this blog is to raise awareness, and to reach out to the Usher community. Because we are not alone in this, and it feels so good to be able to share our story, to connect with people who are on the same journey. To feel part of a bigger thing, that we can fight this. I guess that’s one positive thing about having to deal with a rare disease, it unites, regardless of who and where you are.
With research, possibilities are limitless. But we have to stand together and we have to make ourselves known. The USH Trust is a worldwide Usher Syndrome registry. Identifying everyone in the world with Usher syndrome is critically important to delivering treatment. It also has the potential to dramatically lower the cost of treatments.
I’ve registered Jackson to USH Trust as soon as I heard about it, and I am very thankful for the people who make it their mission to be the bridge between the Usher community and the research community. So keep up the good work Usher Syndrome Coalition and Stichting Ushersyndroom.
Without you I would have been lost.