I have suffered from depression for many years,and looking for others for support!!
Hi my name is ashley and i would like to join this group because i am struggling with the same thing you are.I am from Jonesville, Michigan
I’m 21 years old and tested positive for the defective HD gene when I was 19. I like to keep up-to-date with everything that’s going on as far as research, and I like making friends in the HD community. We all need to stick together!
Hello all~ I have just been dx with EBV and have been told I am in the reactivation stage “extreme flair up”. I had mono as a teenager and I guess now blessed with the residual effects. Would love to know how you all cope with the extreme exhaustion, joint discomfort, dizziness.
Hi all…Im interested in this condition because I just had surgery to repair a tear (last Wed) and it would just be nice to talk to people who know what Im going thru so if I have q’s, I can get an honest answer. The internet has a ton of info but it seems like none of it is first hand
I have RSD and I am very tired of the pain and no longer having a life or any hope of ever getting better!
Got your email - I want to find out what this site is about.
I was first diagnosed with IC back in the 90’s and opted for a surgery that allowed me to go in remission from re-occurring UTI’s and constant pain for about 4 yrs. IC has slowly crept back upon me and is now in full force again causing extreme pain and I have had 6 UTI’s just this year alone. I am going to a Urologist Specialist tomorrow for my first visit to discuss the possibility of an interstim in my back. Does anyone have an interstim? If so, can you tell me about it? I would appreciate anything else anyone might have to offer about pain management, etc. Thanks.
I was first diagnosed with IC in the 90’s. I went through all of the treatments available at that time and then opted for a surgery that put me in remission for about 4 years. IC has not hit me again full force…I am in constant pain and am trying different treatment options again. I have an appt with a Urologist Specialist tomorrow to discuss the possibility of an interstim for pain management. Does anyone have an interstim? Can anyone share with me what they use for pain management, etc.? Thanks.
I have Scleroderma as well as several related diseases and health problems. I’d like to be supported and give positive support. No pity-parties or whining, I’m pro-active and pro-help-your-self, 'cause the doctors sometimes just don’t get it.
Four years ago my son was diagnosed with an ameloblastoma in his upper right jaw just days after his 18th birthday. He’s had several surgeries since then - the latest being a failed bone graft last May. He saw a micro-vascular surgeon a few days ago about further reconstructive surgery utilizing a vascularized bone graft. The surgeon does not advise him to do anything further to restore his mouth since the hole in the roof of his mouth healed over and he does not have to wear an obturator. The surgeon feels the benefit to be gained is not worth the additional scars (leg, arm, & face/neck) that are necessary to harvest bone, soft tissue & blood vessels that would be needed to do the reconstruction. In addition, there is always the chance that the 2nd bone graft could fail and my son might be worse off than he is now.
If an observer did not know that my son was missing his upper right jaw and 4 teeth, they would not know to look at him. He has good function on the other side of his mouth and with his front implants - so unless something new comes down the pike, we are probably done with trying to reconstruct his missing right maxilla.
I am almost 5 years NED (July 1, 2002-present) I was dxed on Oct 22, 2001 and had the surgery on Jan 30, 2002.
I just got diagnosed with Raynaud’s today. I was told that I have a mild case of it. I want to learn what I should and shouldn’t do as well as could and couldn’t.
I’ve had IBS for almost 9 years.
I want to learn more about this cause nobody knows any thing about. All I know is that ever one in the world has had the hystoplasmosis (thats what you get before you get the life threatin scarring that i have) and maybe 20 people get the fibrosinig mediastininitis!!! Can you imagin 300billion people get the hystoplasmosis but maybe 20 people get this rare fatel disease Fibrising Mediastinintis!! I would like to know of any body else who has had it or know some some body who has had it (REST IN PEACE)!!!
post pardum depression
Hi, I will write when I am in less pain and it is not
1:30 in the morning.
I wanted to thank you for all you work for us.
Yvonne
Hi, I will write when I am in less pain and it is not
1:30 in the morning.
I wanted to thank you for all you work for us.
Yvonne
I am intersted in Williams Syndrome, I work for a company that assists the developmentally disabled.
I am a parent of an eight-month old patient diagnosed with Monosomy 1p36 deletion syndrome. I am interested in support services for parents and families who private full time home health care and caregiver services.