My disease has no treatment

How do you cope and what suggestions might you offer to others in the same situation?


Mac Tel Support

  • By kimn1954 · New reply 3:35 am
  • 2797 replies
  • This is a continuation of the discussion called "Idiopathic Juxtafoveal Telangietasis Type 2" started on July 15 2012, under the NORD Rare Disease Support Community, in the My Disease Has No Treatment ...


  • By AlexMelina · New reply April 14, 2014
  • 8 replies
  • Was just curious if anyone knew this, is TMEP an autoimmune disease ...

Atrazine and Malathion

  • By RonaRoseanne · New reply April 6, 2014
  • 1 reply
  • I wonder how much Atrazine and Malathion have to do with what is happening for us. Atrazine is a herbicide that is widely used in Canada and the US. It was banned in the EU a few years back. Malathion ...


  • By Karen28 · Posted March 30, 2014
  • 0 replies
  • Hi all! I know many of theses links are technical and not always the easiest to understand. For those links, hopefully they can serve as a basis for discussion with your health care provider. If a link ...

MCAD/Mastocytosis and Aloe?

  • By StopNFNow · New reply March 29, 2014
  • 8 replies
  • If you have used aloe for MCAD/Mastocytosis, please describe your experience with it. There is conflicting information in the medical literature about it. Thank you ...

Doctors and TMEP

  • By AlexMelina · New reply March 29, 2014
  • 3 replies
  • Hi everybody. My recent diagnosis had come from a dermatologist via biopsy, was just wondering if there's any other type doctor you'd recommend seeing? Who has helped you most? Thank you ...

chronic bowel issue a nd vomiting

  • By wheelchair-23 · New reply March 29, 2014
  • 1 reply
  • Is there anyone that has bowel problem and vomiting and spasm of the bowel and abdominal associate d with stiffperson syndrome ...

New to TMEP diagnosis. Questions!

  • By AlexMelina · New reply March 28, 2014
  • 3 replies
  • Hi everyone. Im 22 years old and was JUST diagnoses with TMEP after 3 years of symptoms. I truly believe in the power of thought and am afraid to convince myself of worse symptoms than are present. Ive ...

PPI's and Mast Cell Diseases

  • By CookinMama · New reply March 28, 2014
  • 3 replies
  • Hi all, I just wanted to make a comment on PPI use. They are only supposed to be used for 2 weeks to get severe GERD under control. They do not know what these do to people long-term. I just read an article ...

Mast Cell Activation Disorder - options for better management?

  • By annak03 · New reply March 20, 2014
  • 7 replies
  • Please help - No one seems to be able to advise me on this. And I cannot find any cases where people are using the management stratey I have chosen so I am unsure of whether there are dangers with this ...

Celebrex for mast cell problems

  • By Kazza75 · Posted February 22, 2014
  • 0 replies
  • Hey there, I been reading of late people with mast cell issues taking an aspirin treatment to help control the excess prostagladins we can produce. I was wondering how this is effecting there stomachs ...

Too many meds?

  • By CookinMama · New reply February 20, 2014
  • 13 replies
  • Ok, so an ER doctor thought I had anticholinergic syndrome from too many antihistamines. My pupils have been dilating, and now Zyrtec gives me awful tachycardia (fast pulse). I'm taking Benadryl and prednisone ...

MCAD? Hyper-reactive to Supplements

  • By SLM2 · New reply February 20, 2014
  • 14 replies
  • I am reacting to foods, supplements, even ultra-sound. I am also Homogeneous MTHFR C677 etc. and certain that I am a poor methlator, but practitioner want to use supplements and I am reacting to the supplements ...

Systemic Mastos: what Rx do you(safely) take for high blood pressure?

  • By cassia633 · New reply February 13, 2014
  • 4 replies
  • Systemic Mastos: what Rx do you(safely) take for high blood pressure ...

cramping fasciculation syndrome

  • By Fitzpatrick · New reply February 10, 2014
  • 1 reply
  • Has anyone tried smoking marijuana oil for the relief of leg cramps. I have been smoking it for the past 3 months with fantastic results. I cannot believe the relief this has given me. The cramps are ...

trigeminal neuralgia, crown removal?

  • By manrysangel · New reply February 9, 2014
  • 5 replies
  • Hi all. I've been scouring boards and reading everyone's posts about trigeminal pain and root canals. I was diagnosed with atypical TN after a.root canal and did all the treatments meds etc. Even had ...


  • By Karen28 · Posted January 15, 2014
  • 0 replies
  • This discussion was started to catalog the many vitamins and supplements that are beneficial for eye health, since our disease, macular telangiectasia, currently has no treatment available. Please do ...

Rare Disease Research

  • By KAU · New reply January 15, 2014
  • 4 replies
  • The National Institute of Health (NIH) has halted the only national research on rare genetic connective tissue disease including Ehlers-Danlos, Fibromuscular Dysplasia, Aneurysms, Marfans and Sticklers ...

Epidural lypometosis

  • By reniven · Posted January 6, 2014
  • 0 replies
  • Hi my name's Rachel and I live in the UK. After a fall 3 years ago I have suffered chronic back pain. It got much worse thus time last year and I now use crutches to walk. After much fuss and pushing ...

Update about Research- Rare Disease

  • By KAU · Posted November 18, 2013
  • 0 replies
  • Recently the National Institute of Health closed a study I was a participant in. This will impact so many patients and families with EDS, FMD, Marfans, Sticklers to name a few. Little research has been ...
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