I'm a 17-year old girl who was diagnosed with scleroderma just below my waistline about 7 years ago. The first few years after the diagnosis I often experienced pain, as my skin was oversensitive. When I found the courage to wear bikinis again I soon found out the spot on my stomach was not apt to be exposed to sun, so now I usually put on spf 50. Other than the physical appearance of it, scleroderma has not really affected my life. I've had some creams from my dermatologist, which were supposed to make it less 'out there', but only one of them has actually had a bleaching effect, which was quite a relief. All I wonder is why I have this skin disease while nobody else in my family (or anybody I've met for that matter) has it, and how it could affect me in the future. I'm relieved to find out I'm not the only one carrying it around..
Greetings from Holland,
The following user gives a hug of support to Georgianna1990: grunts123 (09-03-2011)
i am currently at school in grad school at Amsterdam's international school (I'm from NY) and recently found out that my previously un-identified problems are linked to scleroderma. I was wondering if you had any information that could help me find good medical attention here, since my family is convinced that i would be better off going back to the U.S (where i have doctors), and I know that mentally and emotionally I am much better in a city and country that makes me happy and comfortable (here). Any names of good rheumatologists or any support info would be so great!
Hi...I have had Scleroderma now for over 25 years. I have the Limited kind...
It has effected my hands....ect.
The best Dr. in the States is Dr. Fred Wigley at John Hopkins in Baltimore Maryland. I am sure that there are many more in other places but this Dr. is well known for his research in Scleroderma. He is a long way from me and I have not been able to see him but would love to.
If either of you have any questions ...ask away and I will try to answer them.
Georgianna, you are not the only one, I also have scleroderma/morphea, but mine is on about 60-70% of my body. I can't wear a bathing suit and have to wear long sleeve shirts and long pants year round. marissa
The following user gives a hug of support to micawber999: layla13 (06-24-2011)
Good Morning all. I was diagnosed with limited scleroderma 15 months ago. My symptoms aren't outwardly obvious, but I've been suffering with chronic internal organ disease, and fatigue issues for years. I have diverticulosis of the colon, a hiatle hurnia at the top of my stomach, numerous cysts on my female organs, and urethral cysts as well. I also have chronic pelvic floor pain and muscle dysfunction, which is treated with ongoing physical therapy, and Norco (hydrocodone). Because my skin in not effected, as-of-yet, my Rhumatologist can't officially call it scleroderma. However, scleroderma effects the connective tissue in the body, and this is the underlying problem I am dealing with... My diagnosis is based on blood work findings, so this disease is happening in my body on a cellular level. I see my Rhumatologist several times a year to monitor my situation. I've been on disability for just over a year, as I can't keep up with a routine work schedule.
I believe that scleroderma is a mysterious condition that effects everyone differently, yet we all deal with similar symptoms like chronic fatigue, random cellular damage & chronic pain... It seems that my body is under attack at times, and in remission at other times-in an ongoing cycle...
Hi I completely understand. I'm in a very similar situation. I have had symptoms for 4 years know and haven't been officially diagnosed with scleroderma although I know I have diffuse scleroderma. I don't have a positve ANA. The only lab finding I have is a lymph node biopsy which showed that my lymph nodes are dense fibrous tissue. This is actually a very unusual area for scleroderma to affect. I have chest pain/tightness and upper back pain (like someone is crushing my chest and back together; knee pain;carpel tunnel; cold numb toes; swollen hands/feet/legs; tingliness in hands/legs; pain and weakness in legs; fatigue; GERD; upper right sided abdominal pain; sharp stomach pains during bowel movements (i actually had blockage once, that was extremely painful; constipation; heart palpitaions; breathlessness; high blood pressure; frequent urination; lower back pain while urinating at times; very thight skin on face/legs; extremely itchy skin; neuralgia down left side of arm and in chest; carpel tunnel like symptom in elbows; ringing in ears; scalp hair loss; very dry eyes/mouth; spider veins; all this and I'm only 24. Not that it matters what age you are, but I feel like people in my age are severly overlooked in the medical community. And I don't know one person my age who has diffuse scleroderma or any type of auto-immune disorder or other life threatening disease. So it's really hard sometimes to watch my friends sometimes go to the clubs or party. I can't do those things ne more.
And of course I have my mother who definitely has scleroderma. She hasn't been diagnosed because she doesn't like doctors. But you can actually see her fingers. They curl under and her skin feels tight and tough. She tried to argue with me that its just from old age! I finally convinced her though and she has been looking over her hands and face now, worried. I actually feel bad. BUt she also needs to see a doctor for it though. She also has similar symptoms. But hers aren't so terrible. But she still needs treatment.
Anyway, sorry to explain so much but I just want to connect with others who have similar issues. It helps me cope.
Good morning Lisa, Thanks for your reply. While medical science is getting better all the time, I have to agree with you that Dr's have a long way to go. Unfortunately, situations like yours and mine-often times are overlooked. I'm a single mom of a 7 y/o. I spent many recent years on assistance, trying to attend college full time, and jump through all the hoops that people on aid normally do, but my health problems kept stopping me dead in my tracks! I was eventually labled a lazy hypochondriac, despite my ongoing proof of chronic disease bringing me down... I ran the gammot of tests, endoscopy, MRIs, CT csans, blood work.... I had two surgeries in 2002 & 2003. Had my Gaul bladder removed, then when I got my tubes tied, the surgeons found a cyst the size of a tennis ball on my left ovary. I saw a top Urologyst at Stanford MC for the progressive urethral pain-off and on for 3 years. Finally we discovered two diverticuli (little pockets) on my urethra, and a fistula (opening between organs) on my urethra as well. I also have HBP (which is new within the past two years), and anxiety issues that are triggered from Post traumatic stress. So all these symptoms, and the positive ANA blood test, definately suggest that there is some serious disease happening in my body-despite the lack of typical skin/face issues. I do have raynauds (sp?) syndrome to some extent... My fingertips turn blue when my hands get cold, but they haven't turned white or hard yet-time will tell. Other random symptoms I have are: frequent stabbing pains in my limbs-I thought maybe it was deep vein thrombosis because these pains happen in the same spots over and over again. My Dr. says that's "nothing" lol, and I have a few hard pea-sized hard skin spots on my claves and ancles. I need to see a Dermatologist about these at some point soon...
The good news: This isn't necessarily a death sentence! I think that less than 10% of people with scleroderma actually die from complications therof... Yet the quality of life for those who are severly effected, can be painful and depressing. I think that you and your mom should both monitor your blood pressure-as this is part of the disease. And chronic fatigue goes along with it too. My Rhumatologyst has me on prenatal vitamins because the extra vitamin B is good for the circulation and connective tissue. And Prylosec (sp?) for acid reflux. I've also been on long term pain medication for two years, routine antibiotics, blood pressure medication, and zoloft for anxiety/depression.
I'm sorry that you are effected by such difficult symptoms at your age. It's true that Scleroderma usually hits women in their mid 30s to mid 40s, but we are individuals-not statistics! I think it's very important for you to maintain a healthy diet, and exercise. My Dr. says that general stretching is very important with this condition to maintain flexibility. I need to ask you though: Why can't you go clubbing/partying with your friends? It seems to me that this would be great for your stress level! Are you concerned about drug interactions with alcohol? I don't see any harm in you having a few social drinks on occasion... I can't drink alcohol because the mix with pain meds can be deadly, but when I'm not on pain meds I have an occasional cocktail...
I hope you find some solid answers and acknowledgement Dear, and that you find help to manage your symptoms effectivey!
hi sheri my name is linda i lost my mom to scleraderma 13 years ago now i think my son has it they have tested him since he was 16 he is now 29 un conclusive results , he is in prison now they say they will find out what is wrong with him, fought sos-sec for 3 years could,nt get it think that is why he turned to drugs his hands are claw like his face is tight has alot of joint pain and deformity in knees and arms this just got bad in the last 5 -8 years don,t know what to do need someone to talk to. would like to here from you [email]firstname.lastname@example.org[/email]