Are their support groups for Myelofibrosis?

Posted by toste @toste, Aug 13 9:48am

Diagnosed with Myelofibrosis living in California. Would like to find out about group support.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

davi0937 | @davi0937 | Aug 13 12:01pm

Me too - we could start one? Diagnosed June 2025 - such a shock. I have an SRSF mutation- means I could move to AML.

Janell, Volunteer Mentor | @jlharsh | Aug 13 1:33pm

Hi @toste, and welcome to Mayo Clinic Connect! This is a new one on me. I am so glad you posted this discussion so you can connect for support, and that others coming to Connect with the same question find you.

I went to the home page and typed ‘myelofibrosis’ into the search box. I found links to a number of related discussions you may be interested to review if you haven’t already. They are all in the Blood Cancers and Disorders Support Group.
- Join/Follow Blood Cancer and Disorders Support Group: https://connect.mayoclinic.org/group/blood-cancers-disorders/
- Myelofibrosis discussions: https://connect.mayoclinic.org/search/discussions/

Also, the Mayo Clinic Hematology Blog has a couple of related posts:
- Myelofibrosis research: https://connect.mayoclinic.org/blog/hematology/newsfeed-post/international-research-team-identifies-genetic-based-model-for-predicting-outcomes-in-prim-1/
- Myeldoysplastic Syndromes treatments: https://connect.mayoclinic.org/blog/hematology/newsfeed-post/myelodysplastic-syndromes-treatment-past-present-and-goals-for-the-future/

@davi0937, A support group sounds like such a great idea. You may want to check out current discussions (above) then see what you think. Also, I noticed the research blog (above) is not super recent, but references SRSF, your genetic culprit. You can click “hematology” in the upper left corner, then find ‘contact us’ on the blog home page. From there you can contact Hematology Staff and ask your questions. Let them know you were referred to them by Mayo Clinic Connect.

What led you both to diagnosis, and what challenges does Myelofibrosis create for you? @toste, were you recently diagnosed? Do you have other health issues or complications?

davi0937 | @davi0937 | Aug 13 5:36pm

In reply to @jlharsh "Hi @toste, and welcome to Mayo Clinic Connect! This is a new one on me. I..." + (show)

Thank you- I will check out this information! @toste - let’s stay in touch!

tbrittingham68 | @tbrittingham68 | Nov 6 6:32am

In reply to @davi0937 "Me too - we could start one? Diagnosed June 2025 - such a shock. I have..." + (show)

@davi0937 Wondering if you found a group specific to mylofibrosis. I too was diagnosed this June and I’m just looking for Support.

Lori, Volunteer Mentor | @loribmt | Nov 6 8:25am

In reply to @tbrittingham68 "@davi0937 Wondering if you found a group specific to mylofibrosis. I too was diagnosed this June..." + (show)

@tbrittingham68 Welcome to Mayo Clinic Connect. While you won’t be able to meet in person, you’ve just joined a huge support group for myelofibrosis. It can be so helpful being able to speak with others who are walking along a similar path.

I’m putting in a link to introduce you to a couple of the members. You’ll meet people like @snakebite @davi0937 @1pearl who are all at different stages with their MF.
~What are treatments for myelofibrosis?
https://connect.mayoclinic.org/discussion/mylofibrosis-1/
There are so many discussions with our MF group that I’m not sure which would be most relevant for you, so here are the results of a quick search. Please feel free to scroll through results and to jump into any conversation to ask questions.
Search Results for Myelofibrosis:
https://connect.mayoclinic.org/search/
Are you currently involved in treatment for you MF or is this a mindful watching period for you?

tbrittingham68 | @tbrittingham68 | Nov 6 9:26am

Good morning I have secondary Mylo fibrosis that was diagnosed in May of this year. I was diagnosed with polycythemia back in 1995. I never really had any issues with my PV except for an enlarged spleen. I am finding it to be quite different with MF. I’m just looking for support with other people who are going through the same thing.

davi0937 | @davi0937 | Nov 6 2:58pm

In reply to @tbrittingham68 "Good morning I have secondary Mylo fibrosis that was diagnosed in May of this year. I..." + (show)

@tbrittingham68 we are here for you. Lori has information in her post above that connects you to others with Myelofibrosis and discussions.

tbrittingham68 | @tbrittingham68 | Nov 7 12:41pm

Me too Diagnosed in May 2025

toste | @toste | Nov 7 1:48pm

My husband was diagnosed in July.

toste | @toste | Nov 7 1:51pm

In reply to @jlharsh "Hi @toste, and welcome to Mayo Clinic Connect! This is a new one on me. I..." + (show)

@jlharsh my husband was diagnosed in June-July. I am doing research for answers.

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