How do you cope and what suggestions might you offer to others in the same situation?
- By juliej1960 · September 3, 2008
- 0 replies
- SINCE MY HUSBAND WAS DIAGNOSED WITH THIS HORRIBLE THING WE HAVE DECIDED TO JUST LIVE OUR LIFE AS WE DONT KNOW WHEN IT WILL STRIKE AGAIN. ITS NO GOOD WORRYING ABOUT THE FUTURE LIVE FOR TODAY. XXXXXXXXXXXX ...
- By maybee · August 27, 2008
- 0 replies
- My son has coped with this for 10 years. We only now have had a named put before it...it is hereditary. Others in the family have suffered...the pain is constant...and sometimes they can barely go on ...
- By sheila_r · August 20, 2008
- 3 replies
- Hello, I am new to this group... But my problem is with my 17 year old daughter who was originally diagnosed with costochondritis...but has had nothing but severe, chronic PAIN!!-(which they call: Tietze's ...
- By NickArcella · August 17, 2008
- 0 replies
- THIS CONDITION S CATEGORIZED UNDER "ORPHAN DISEASES AND DISORDERS" ... My daughter has this condition and i am trying to get neurologists and neurosurgeons advice and opinions. Obviously i have this open ...
- By suzanne22452 · August 15, 2008
- 0 replies
- anyone have any info on this or purigo nodularis ...
- By LumpyHead · July 19, 2008
- 1 reply
- 51 y.o male with tumor onset at puberty. I am now experiencing a coalescence phase of tumor growth with less-than-satisfactory appearance. I have found a few dermatologic surgeons in Seattle willing to ...
- By ShingleLady · July 5, 2008
- 0 replies
- I hope to connect with others who suffer from this strange disabling syndrome. I have lived with this about 4 years and have found very little help. Is there anyone else out there that is suffering from ...
- By bleedingsoul · June 26, 2008
- 7 replies
- i was diagnosed with HSP 2 years ago and have been battling with it since then. i went to seek medical advises from different doctors after another but nobody could ever give me a reason why it is happening ...
- By bleedingsoul · June 25, 2008
- 3 replies
- so just live with prayers,hope and look at the brighter side of life ...
- By rosebud050298 · June 18, 2008
- 2 replies
- I wanted to know it anyone is familiar with fetal hydrops pr hydrops fetalis. if anyone knows anything about this please let me know ...
- By SueS · June 15, 2008
- 2 replies
- I have been sick and untreated pretty much 10 years. What treatment has been tried the last four years has all been rough going. Is it too late? SueS ...
- By docmaus · May 27, 2008
- 9 replies
- to talk about it with someone else who has the disease ...
- By mommyof5 · April 14, 2008
- 0 replies
- I am looking for N E 1 that has or knows someone that has "Weill-Marchesani Syndrome" please they say it's "RARE" but I have 3 out of 5 of my children have his so it can't be THAT rare if you have any ...
- By camae · April 10, 2008
- 0 replies
- It's now been 16 months since my sons diagnosis with HSP. He was most recently hospitalized for 7 days before Christmas with bleeding in his lower intestines. This time the IV Prednisone did nothing to ...
- By Molly_Louise · March 27, 2008
- 4 replies
- Has anyone had any experience of alternative therapies for CMTC? Eg acupuncture to improve circulation, Chinese herbs, regular massage ...
- By Kivalina · February 29, 2008
- 1 reply
- I go to doctors they want to study me.I Talk to people they shun meI have NF1.I have tumors that grow on my nerve endings.My body is covered My spine has been attacked by them so I have bad pain all the ...
- By buzz1 · February 22, 2008
- 0 replies
- My husband was first diagnosed with Parkinson's Disease, then later re-diagnosed with myotonic muscular dystrophy type 2 (more rare than type 1). Is anyone out there living with MMD 2 ?? I need someone ...
- By johnlewallen · February 9, 2008
- 1 reply
- Greetings to all, I have this genetic condition. I have been told that TRPS is included in the NORD group but I have not been able to find any thread on this. It is also known as Langer-Giedion Syndrome ...
- By MSDaughter · January 29, 2008
- 0 replies
- While MS still has no cure, I was watching Good Morning America and saw a segment on "brain in a box." A device that helps patients with foot drop. I was amazed. I am on the internet frequently. I often ...
- By Maggie2300 · December 27, 2007
- 34 replies
- Hi I am new to the group and wondered if anyone has had problems with bladder infections that turn out to be not an infection, as I keep getting these and my doctor has no idea what to do about it. I ...
