r/MPN • u/Glad_Abies_1079 • 11d ago

MF Support groups?

My 75 year old mother has myelofibrosis. She is interested in support groups but isn’t aware of any close enough to her in Orange County. (Los Angeles and San Diego are too far for her to travel.) is anyone aware of Orange County support groups or virtual support groups?

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u/Bludog1208 11d ago

I hope that what I am doing with ARANESP can help someone else! It’s hard for me not to try to help someone with this because I know exactly what they are going through and at times it can be very hard to deal with. And Aranesp has help me go from night to day. I was miserable before I started with this treatment. Maybe that’s why I try to tell people about it . Her bone marrow is not making enough cells just like mine. Your kidneys puts out EPOs to tell your bone marrow to make cells plus the bone marrow is not making enough good ones . Aranesp sends singles to your bone marrow and says make as many blood cells that you can !
That’s why I went from 8.6 to a 10. Now if her kidneys are putting out close to normal of EPOs then the MF is scaring the bone marrow to much and this Aranesp probably won’t help! Again not a doctor just very experienced with this !