My disease has no treatment
How do you cope and what suggestions might you offer to others in the same situation?
Discussions
Please sign my Ehlers Danlos Syndrome Petition
- By GumbyDav · Posted 1:22 pm
- 0 replies
- Anyone living in the US, please sign my petition to make Ehlers Danlos Syndrome recognized as a disability! http://wh.gov/l3haJ or https://petitions.whitehouse.gov/petitio n/cousin-disorder-severe-painful-debilit ...
Mac Tel Support
- By kimn1954 · New reply 9:24 am
- 912 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 ...
Tarlov Cyst and Pain
- By Jojo1972 · New reply 2:34 am
- 47 replies
- Hello I am 40 years old and in pain with my lower spine sacrum/coccyx in 2010 I was told I had 1 Tarlov Cyst just had a new MRI on 3/28/13 and now I'm told there are at least 5 Tarlov Cyst. I am told ...
henoch-schonlein purpura
- By kalima2013 · New reply yesterday at 2:05 pm
- 27 replies
- My five year old girl was recently diagnosed with HSP. About five weeks ago, she was vomitting a lot and was quite lethargic. We took her to the doctor and she was told she had tonsillitis and was sent ...
Idiopathic Juxtafoveal Macular Telangiectasia Type 2
- By kimn1954 · New reply June 17, 2013
- 132 replies
- I was diagnosed two months ago with idiopathic juxtafoveal macular telangiectasia type 2 by a top retinal specialist. One month ago my diagnosis was confirmed by another top retinal specialist/professor ...
Treatment for Hereditary Angioedema
- By BkJigz · Posted June 10, 2013
- 0 replies
- Hi everyone, I was just diagnosed with HAE. My doc and I were discussing treatments (I know the topic is disease has no treatment, wasn't sure what else to put it under) and she told me that many of them ...
Partial diabetes insipidus
- By tiffy78 · Posted June 9, 2013
- 0 replies
- So frustrated with my sons condition. My son w born with dual collecting system on his left level-5 vescolur reflux which managed to damage his lower left kidney. They removed lower pole of kidney when ...
Burning Mouth Syndrome - want to connect with others
- By thisdogdonthunt · New reply June 8, 2013
- 21 replies
- I've posted about this before but now have a 'formal' (if that's really possible with any idiopathic disease) diagnosis of Burning Mouth Syndrome. My mission is to find as much relief as I can as I'm ...
Oculopharyngeal Muscular Dystrophy
- By ebiggs · Posted May 20, 2013
- 0 replies
- What is your experience with the disease ...
A Little Girl With Giant Axons....
- By runnergirl1 · Posted May 20, 2013
- 0 replies
- “When you hear hoof beats, think horses, not zebras.” So goes the mantra of first-year medical students. If a common disease is a horse and a rare disease a zebra, then giant axonal neuropathy (GAN ...
Help
- By jaclynsuri · New reply May 11, 2013
- 1 reply
- What do u do ...
Sca
- By bsmith5837 · Posted May 4, 2013
- 0 replies
- Does anyone out there wish to share their story ...
Situs inversus incompletus with polyspenia... And tummy aches
- By Bs_Mummy · Posted May 3, 2013
- 0 replies
- Hi there! Never been here before but looking for some advice. My daughter aged 6 was born with situs inversus incompletus (stomach on the right side, no gall bladder, heart with two holes thankfully now ...
ISM and Pregnant
- By ISMSusan · New reply April 24, 2013
- 2 replies
- Hello to all I have not been on here in a long while! But I have 2nd Stage Systemic Masto and it is confirmed in my skin,bone marrow,upper and lower GI lining... I have had swollen lymph nodes for months ...
Mac Tel Support
- By fietsband · New reply April 23, 2013
- 2 replies
- I am a woman of 56 years old and I have the desease mactel now for almost tthree years. I'm desperate looking for a cure. I contacted dr Gillies in Australia. He probably found a cure, but it still will ...
Please sign my Ehlers Danlos Syndrome Petition
- By GumbyDav · New reply April 8, 2013
- 5 replies
- Anyone living in the US, please sign my petition to make Ehlers Danlos Syndrome recognized as a disability! https://petitions.whitehouse.gov/petitio n/proclaim-ehlers-danlos-syndrome-eds-di sability/yzvYyxGF ...
sick of being sick !
- By montie67 · New reply April 2, 2013
- 2 replies
- hello , my name is montie. my wife was diagnosed with systemic mastocytosis 3 years ago. she is under treatment (for symtoms) but nothing seems to help with the nausia. she is taking promethazine, transderm ...
Trigeminal Neuropathy
- By sabby7 · New reply March 28, 2013
- 5 replies
- I was recently diagnosed with Trigeminal Neuropathy on the right side of my face. I have no pain, just numbness. I have had this for around 9 months and the numbness has been getting progressively worse ...
Non-Alcoholic Genetic Cirrhosis
- By rubybutterfly · New reply March 27, 2013
- 1 reply
- what the hell is this? why didn't i get any medication for this condition? no one can or will answer any questions for me other than to say.."..its a genetic condition and we don't know very much about ...
Capillary Telangiectasia
- By Linda-Rosa · New reply March 25, 2013
- 4 replies
- My last MRI was on Nov.30th of this year, and I was diagnosed with a vascular malformation of the brain such as capillary telangiectasia. In time, will this turn into a brain tumor leading to brain cancer ...
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