The story of Connie
So far I’ve been told I’m the only documented person like me. I have ITP, Neutropenia, haemolytic anaemia and a faulty gene. They all sometimes get called pancytopenia. They believe the faulty gene is what caused everything to happen to my body. I was diagnosed with just ITP at 14 and claimed the others along the way!
I’m now getting ready to have a bone marrow transplant that they hope will give me a better Quality of life. They’ve told me they’ve never done anything like that on someone with all my conditions. They know of one other person who’s had it that is similar to me but different in so maybe other ways.
being so different makes it hard to find advice and people you can talk to or someone who might relate. With all my illness I can relate to people with some things but not others. Being rare is hard but I know I’m not alone.
im sharing my story because there might be someone out there like me and I don’t know it yet .
for everyone who’s going through something don’t give up, your doing amazing ❤️