Myelofibrosis Disease Overview and Treatment Options

[@krisz99]

I'm 19 yo and I am a primary myelofibrosis patient for 1 year. I believe in science and I hope that doctors will find out a cure as soon as possible.

[@mollyhohenzollernstewart7444]

Kriss Hu wow 19 , just wonder how are you doing now

[@joeyvazquez2364]

I’m 20 years old and I have primary myleofibrosis as well. I’ve been having it for 6 months

[@luvjesuslee2033]

Prayers to all that a cure is soon found 🙏

[@TheLeahygirl]

They thought I was very young to have myelo when I was diagnosed in 2014 at 54 years old but you are so much younger. I hope they find a cure for you soon. Best wishes to you all.

[@isaacgaming2199]

@@TheLeahygirlhi, i hope you are doing well. my 62 years old brother was diagnosed and they recommending bone marrow transplant did you get that treatment?

[@joanckosta9473]

Excellent information. I understand this disease that impacts my friend much better.

[@srinivasadivi7624]

This disease killed my mother recently at an age of 69. I have admitted her in multi speciality hospital but they haven't evaluated correctly but they gave treatment for Lungs, Liver and just transfused blood twice in every week. She fought with this disease and finally gave up.

[@thestreamoflife1124]

I use OZONE intravenous infusions and recently started ozone Rectal inflations. Giving me a better quality of life. I am 76. Thriving. Taking Jakavi

[@kierquianzon]

When were you diagnosed? My mom was just diagnosed with it.

[@bobbiedaniels5606]

I know my doctor is a specialist, but he only cares about my blood counts. If I mention other symptoms he tells me to go to my primary care physician. I consider myself lucky to have the same doctor since they can't seem to keep them at my clinic, but he has no personal interaction with me and I feel isolated. How do I find a doctor who will interact with me. He thinks he is, but isn't. Also I was excited to hear about the muscle cramps relating to Myelofibrosis. I have gained 15 pounds in about a year and a half. I'm only 5'2". No one has a clue. I spoke to a dietician who said it was not due to poor eating habits. These videos encouraged me to try to find someone that I can share my concerns with. Thank you.

[@chuckkady7282]

Oct 8, 2018 ~ This disease killed my father at age 68 with lots of suffering. He passed 1993

[@victorialoren2372]

Chuck Kady my condolences to you. My dad has it now for couple years now

[@chuckkady7282]

There's been some advances sin my Dad's passing in 1992 Adela. If you're a match you may want to contact the Dr in Charge and ask about a marrow transplant. You may be an eligible doner. U could save his life and grant him a better quality of life ` Hugs chuck

[@ThaliaHome]

@@victorialoren2372 hi victoria....please could you tell me how many years has your father myelofibrosis and how old is he? Thank you very much!!

[@TheMaurice723]

I was diagnosed with myelofibrosis 2 years ago. How does one cope with the fatigue and bone pain. I work 12 hours a day on my job and it can get tough sometimes.

[@ibrahimdarwish2]

Hello, my mother is suffering from the same disease, but here in Egypt they couldn't be sure from the diagnosis and cannot give the appropriate medication, please I want to communicate with the doctor who havs the full overview for this disease so that I can discuss with him the situation and if he has the solution we can travel and make it. Please I'm waiting for your reply as soon as possible, thanks

[@TheLeukemiaLymphomaSociety]

Ibrahim, We are so sorry to hear. Please reach out to The Max Foundation, found here: www.themaxfoundation.org/ that can help provide support. We are sending our best to you.

[@kelliebeattie8398]

So sad this Myelofibrosis my dad sadly died at 53 yrs old 9 yrs ago of this horrible disease 😣💖💖

[@victorialoren2372]

Kellie Beattie I’m sorry to hear that. Prayers to you 🙏🏻. My dad unfortunately has it now

[@luvjesuslee2033]

Kellie My Deepest Condolences to you & your Family. I have PV but have many symptoms of M. now. My Daughter is with EMS, & in her 30's. Her Physical was just done for this year through the County she been with for about 11yrs. Her blood work just came back, & now she needs to be tested for Polycythemia Vera. I was in my late 40's or Early 50's when diagnosed. Prayers for Everyone here that a cure is very close.🙏🙏

[@mikesummers7861]

Wondering if there is more info available regarding neuropathy in feet, toes (Novocain toes) and Charlie horses at night.

[@RajeshKumar-pm7df]

how primary MF is distinguished from infection induced MF like TB or Leishmaniashis especially who are triple negative (JAK2, CALR, MPL)

[@Billguz978]

Imetelstat (geron Corp)

[@swapniljain2175]

How to cure ? It's emergency pls help me...

[@beautiful7334]

I am 32 years old and i have this disease. I have bone pain headaches and muscle pain.. now I work only part time because i get tired every time..