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



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  • Mini5_1


    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


      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.

      • Mini5_1


        my diagnosis is a little tricky. For many years of having reticulin fibrosis is was never symptomatic until recently. 2yrs ago I started taking neupogen for my neutropenia due to the pandemic. About 1yrs after taking the injections, I started having low RBC and Low platelets always dizzy and easy bruising. My dr at the time thought is was MDS and boy was a scared. Fortunately it wasn’t MDS or leukemia. My pathology report read mild to moderate myelofibrosis. My dr still thought it was an anemia issue or colon issue because I was losing a lot of blood. They were treating the anemia but nothing worked. In Nov 21 I stopped taking the neupogen and my blood count started improving until now.. the anemia and low platelets are back and my new dr believes it’s myelofibrosis. I’m scheduled to have an bone marrow biopsy in a few weeks!

  • Cavique


    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.

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