Looking for Others with a Rare Disease

just trying to find others with this rare disease. it can be pretty isolating being alone in understanding it.

Your answer

Cavique

2y ago

I was diagnosed in 2017 and had a bone marrow transplant in December of 2018. My donor was my brother. It has been 3 years and I have a normal life but take a ton of pills daily.

Mini5_1

2y ago

You’re not alone! Just received diagnosed with myelofibrosis. I’ve have congenital neutropenia since birth. Reticulin fibrosis has been in my bone marrow for quite some time.. it has now mutated into myelofibrosis.. how about you?

VannG

2y ago

so I was actually pregnant and got diagnosed because at an anatomy scan for the baby they could see my spleen 😬 It was about three months of blood draws and getting my hip drilled into to get diagnosed and it was much less scary then... Less scary when they told me I probably wouldn't be affected for ten years or so. Less scary when I didn't have symptoms.

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