Thursday, February 28, 2013

Great news: The aHUS Foundation website now has an adult tab!

Atypical HUS was always thought to be a disease that affected children. However, over the past few years, it has been seen that the disease affects a few adults as well. There is a foundation called the Foundation for Children with Atypical HUS that has served as a support group for families with children that have aHUS. Since there was no separate group for adults, we adults with this disease would also flock to this foundation's website for information and support!

Of course, it worked really well since the information was very similar.

However, there is no denying that the issues an adult with this disease has to face are very different from those that a child has to face. On the occasion of Rare Disease Day this year, the foundation has now added a whole new section for adults with aHUS!

I am happy to add that I have been able to contribute to the section myself. I was asked to present my perspective on having this disease and the issues I face. I was very happy to write a small article that would go into this section. Here's a link to my article.

Many thanks to Linda Burke, a mother of kids with aHUS for being the tireless crusader for all things aHUS for kids and adults for making this adult tab happen!

No comments: