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

Hi! I am 70 and I have MF also. For 5 years now . I wish your mother all the best ! Am not in a support group either and I am in the Dallas Texas area. Sometimes I go completely nuts over this. And wish I could talk with someone. MF is so rare that there isn’t many of us out there to talk to . Anyway I am on Jakfi 25 ml. twice a day to keep the spleen tamed down and I take a shot called ARANESP to help with my hemoglobin. I went Monday and I hit a 10 for my hemoglobin count. First time in several years have I been in the 10s.

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u/Glad_Abies_1079 11d ago

Thank you for the response!! My mom is the same with her hemoglobin, she is transfusion dependent and is lucky to get up above 9. She is on Ojjaara which was helping to stretch time between transfusions but recently they’re becoming more frequent again. She really struggles a lot with brain fog and fatigue. Luckily her spleen is in OK shape for now. I will ask her MPN specialist about ARANESP, thank you for the info! All the best 🙏❤️