Search results for Myelofibrosis

Autoimmune myelofibrosis

  • By magritte · Posted December 24, 2009
  • Discussion in Genetic Alliance · 3 replies
  • Hello, My aunt was recently hostpitalized because of extremely low blood count, and for a while a number of doctors were unable to find out what was wrong. After four weeks of testa and what not, she ...

Myelodisplastic syndrom and myelofibrosis

  • By hikerman57 · Posted May 21, 2012
  • Discussion in Genetic Alliance · 2 replies
  • About 8 months ago, while doing a routine check-up, my doc and I discovered I was clinically animic. I'd been struggling with being tired for a number of years prior, but mostly chaulked it up to life ...

Myelofibrosis Anyone?

  • By runningmermaid · Posted May 7, 2012
  • Discussion in Genetic Alliance · 5 replies
  • I have Myelofibrosis, which has been stable for quite some time. It's 5.5 years after my initial diagnosis and I do believe I've now hit the downhill slide of this disease as my red blood counts are below ...

My Daughter's Journey With Scleroderma

  • By clbalo · Posted August 22, 2012
  • Journal entry · 3 replies
  • My daughter was diagnosed with Essential Trombocythemia in 1989, then myelofibrosis. She underwent a successful stem sell transplant (2008) from her brother but developed a very severe graft versus host ...


  • By defro222 · Posted March 9, 2008
  • Discussion in Genetic Alliance · 3 replies
  • My sister recently passed away from this disease, which has no cure She died within 6 months of diagnosis, even though current literature says one can live 10-15 years. Current literature also says it ...

need some positive help for myelofibrosis

  • By zinger · Posted February 24, 2010
  • Discussion in Genetic Alliance · 5 replies
  • I was recently diaginosed with Myelofibrosis. At the present the hemotologist told me I was asytematic. I will need to get regular blood tests starting at 2 months from now. Could use some advice or help ...

New Myelofibrosis Discussion - weird blood counts

  • By runningmermaid · Posted October 29, 2012
  • Discussion in Genetic Alliance · 0 replies
  • My topic "Myelofibrosis Anyone?" closed after 90-days. So I started it again. I think I am on the downhill slide of this disease. My cell counts continue to drop, but now I notice that my neutrophils ...

The Next Big Rare Disease Drug?

  • By zinger · Posted September 17, 2010
  • Journal entry · 0 replies
  • Robert Lipnick was wasting away two years ago. His weight had plummeted to 127 pounds thanks to an incurable blood cancer called myelofibrosis that enlarged his spleen and made it almost impossible to ...

MDS and me. What now?

dcal2u (Inactive)
  • By dcal2u (Inactive) · Posted May 30, 2008
  • Discussion in Cancer · 51 replies
  • I was just diagnosed 2 weeks ago with MDS. I can't find anyone else who has this particular disease so here I am. I haven't started chemo yet and am worried about the after affects. My doc. says it is ...

Promedior Presents Encouraging Results from Clinical Study of PRM-151 in Pa

  • By strong · Posted July 29, 2013
  • Journal entry · 6 replies
  • ATS Oral Presentation of Phase 1b Data Highlights Potential for Novel Mechanism to Treat Fibrosis LEXINGTON, Mass. — Promedior, Inc., a clinical stage biotechnology company developing novel biologic therapeutics ...

Indolent Systemic Mastocytosis

  • By tgcheech · Posted March 29, 2010
  • Discussion in Genetic Alliance · 27 replies
  • I have had ISM symptoms for over 10 years but acute symptoms for the last 9 months. I was finally diagnosed just 2 months ago and have just begun treatment with Pepcid, Allegra, Gastrocrom and Marinol ...

No hope, DCLO is down to 29%

  • By bkimbell · Posted July 20, 2011
  • Discussion in Scleroderma Foundation · 45 replies
  • I recently went for testing to have a sympathectomy in hope of finding some relief with Raynauds. My DCLO was to 29% down from 37% just 6 months ago. I'm on Rivatio, Tracleer and Cellcept in hopes of ...

could this be sarcoidosis?

  • By KarenR1 · Posted December 22, 2007
  • Discussion in Stop Sarcoidosis · 1 reply
  • Hi Everyone, I'm new here and just wanted to get some opinions. My mom has been having a lot of health problems, particularly over the last year, but each problem has been looked at as being separate ...

Moving on...

  • By AngL · Posted February 4, 2009
  • Journal entry · 18 replies
  • My mom recently got diagnosed with MDS. She goes for her appt with the surgeon on wed to discuss port placement to start her chemo treatments. We all have a positive attitude, but are also pretty scared ...

Myelofibrosis new downward turn

  • By zinger · Posted January 21, 2011
  • Journal entry · 0 replies
  • Been having blood work ran monthly since June of '10 and for the most part have been stable. This last one on the Jan 19th took a turn for the worse. Counts dropped enough that I just started on Hydrea ...

I stood up to my doctor today...

  • By Shamps14 · Posted November 27, 2012
  • Journal entry · 33 replies
  • I told her I refuse to get another RECLAST or any other infusion or oral medication for my Osteoporosis, even if next year's Dexascan shows I need it! I told her I will exercise, eat right and take my ...

Senior Loken Syndrome

  • By erinsrainbow · Posted April 11, 2007
  • Discussion in Genetic Alliance · 41 replies
  • Does anyone have a child with Senior Loken Syndrome? If so, I would like to hear from you. How was your child diagnosed ...

Silent treatment

  • By david21 · Posted March 3, 2009
  • Discussion in Genetic Alliance · 0 replies
  • My wife, has been diagnosis with The cellular phase of myelofibrosis. She will not tell me anything ...

my dad

  • By Daddys-Girl · Posted March 17, 2010
  • Discussion in Genetic Alliance · 8 replies
  • my dad was recently diagnosed with myelofibrosis. I am trying to be as suportive as I know how to be but I'm wondering if anyone has any helpful information for me. There is no cure just treatments. I ...

Th1/Th2 imbalance produces cytokine response

npf-172 (Inactive)
  • By npf-172 (Inactive) · Posted April 15, 2006
  • Discussion in TalkPsoriasis · 17 replies
  • ** Originally posted by wildflowerAnn ** I belong to an eczema support forum. One of the members posted a very interesting summary of a scientific research article which caught my eye because it mentioned ...

White blood count

  • By anoush1954 · Posted July 9, 2011
  • Discussion in Scleroderma Foundation · 4 replies
  • Hi just a quick question. Has anyone ever had a high white count or high neutrophil count? I have no infection or anything like that going on and both were pretty elevated. Just wondering if this is something ...

Free 23andMe genetic testing for mast cell dx'd patients

PalominoMorgan (Inactive)
  • By PalominoMorgan (Inactive) · Posted February 2, 2012
  • Discussion in Ehlers-Danlos National Foundation · 2 replies
  • Check this out. Trying to spread the word. Knowledge is power and looks like someone is trying to learn more. (Purposely posted as public for more exposure.) 23andMe Myeloproliferative ...

on LPolycythemia Vera

  • By cndygal1 · Posted March 3, 2012
  • Discussion in Genetic Alliance · 25 replies
  • My husband has been diagnosed with this disease and no one seems to know much about it. Interested in anyone that is familiar with this disease. Right now he is on pain medication, plus every two weeks ...


  • By Slvrlake · Posted November 12, 2012
  • Discussion in Scleroderma Foundation · 4 replies
  • Hello all - I was just diagnosed with systemic scleroderma after chasing around for answers for 15 years. To be honest part of the delayed diagnosis was my fault - I was diagnosed with Morphea in 1997 ...

Promedior PRM-151

  • By moosdapper · Posted January 8, 2013
  • Discussion in Pulmonary Fibrosis Foundation Patients · 17 replies
  • Maybe there's hope? This company is in 2nd stage of testing and looks good so far. Anyone care to guess how many years it'll take until it's approved? Let's keep our fingers crossed! ...


  • By joeandjo2 · Posted January 10, 2013
  • Discussion in Genetic Alliance · 0 replies
  • Would the Bill Henderson Protocol be helpful with this disease?(flaxseed oil and cottage) A fifty something year old cousin is dealing with this and is undergoing clinical testing at MD Anderson Hospital ...

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