Scleroderma

Question: scleroderma? anyone even heard of it?

Answer: yeah i have...my best friend's mom died of it last Thanksgiving. here is what you should know: Scleroderma is an autoimmune disease of the connective tissue. Autoimmune diseases are illnesses which occur when the body's tissues are attacked by its own immune system. Scleroderma is characterized by the formation of scar tissue (fibrosis) in the skin and organs of the body. This leads to thickness and firmness of involved areas. Scleroderma is also referred to as systemic sclerosis. The cause of scleroderma is not known. Researchers have found some evidence that genes are important factors, but the environment seems to also play a role. The result is activation of the immune system causing injury to tissues that result in injury similar to scar tissue formation. The fact that genes seem to cause a predisposition to developing scleroderma means that inheritance at least play a partial role. It is not unusual to find other autoimmune diseases in families of scleroderma patients. Some evidence for the role genes may play in leading to the development of scleroderma comes from the study of Choctaw Native Americans who are the group with the highest reported prevalence of the disease. The disease is more frequent in females than in males hope that helps....its a horrible horrible disease

Question: If anybody is associated with the Scleroderma Foundation or Federation, do you know if there is funding? In other words, if a scleroderma patient has no insurance, do you know if there is funding available that would help that scleroderma patient?

Answer: Do a little more web research and contact those who're available via internet. God bless.

Question: what symptoms 1st appear in someone with lupus or scleroderma? what are the 1st symptoms usually experienced if you are suffering with lupus or scleroderma, do symptoms persist or can they come & go.

Answer: I'll try and answer the lupus one as that's what I know. The symptoms are very wide as lupus is a very individual illness that isn't the same in any 2 patients. In my case I woke up thinking I had a very bad case of flu. I never went to the doctor as I was always fit and healthy but did so in this case as I really felt awful. I was sent away by the GP who said I should just take some paracetamol and go to bed (she didn't examine me). The next day I woke up in a pool of sweat and I couldn't move at all. All my joints were swollen and I had a rash on my legs, I also had a blinding headache. A doctor was called and I was rushed to hospital as they thought it could be meningitis. I stayed at the hospital for a week (no blood tests were ever taken!), I was then sent home with the diagnosis of a 'virus'. For the next 4 years, about once a month I would go to my GP describing classic lupus symptoms (I didn't know what lupus was at the time). It was only when the doctor got fed up with me and I had severe joint pains that they referred me to a rheumatologist who immediately diagnosed systemic lupus. In a lot of the patients we see, the most common symptoms seem to be the exhaustion, depression and joint pains, most people have said they have had them all at some time. Then we all have had some or all of other symptoms such as mouth ulcers, hair loss, etc etc. The symptoms of lupus 'wax and wane' in other words come and go. They can be triggered if you're particularly stressed or even have something as simple as a cold. Lupus can also sometimes go into complete remission (although lupus is currently incurable so it never totally goes away and can be triggered again). If you read the patient stories on our website you will see that the start in each patient varies http://lupus.org.uk/whatislupus/whatislupus.htm. We will also be launching a brand new lupus documentary in the next few weeks (which will be available for everyone to view free of charge on our website) and again you will see patients talking about how their lupus started and it's different in each case. Hope that helps a bit.

Question: My mom has scleroderma; what is the best way to comfort her from afar? My mom was diagnosed with scleroderma 6 or so years ago. Lately, she says it has been getting worse, affecting her esophagus and she needs to get it stretched. I'm her only family, and I live over 5000 miles away. She has a few friends, but no one to insist they go to the hospital with her etc. It's breaking my heart...what else can I do besides call her and give her my love and support?

Answer: I don't understand what her condition is, but i'll try to help in the best way I can. "Life is too short so take the time and appreciate". -Lyrics by Nicholas Jonas. Appreciate the fact that your mother is alive. You have an oppertunity to visit her, so why dont you? She is your MOTHER. Come on - you LIVED inside of her for 9 whole months and she brought you into this world. The least thing you could do is to pay her a visit? Dont take your mum for granted. Xx

Question: Does the lung involvement in scleroderma feel like a collapsed / folded lung? I have had atelectasis before. Now my siadnosis for the bigger issue may be scleroderma. I am curious if the pulmonary fibrosis symptom would feel like atelectasis.

Answer: I would ask your question on www.sclero.org they have a great Scleroderma forum there. I've asked Scleroderma questions here before and don't find many answers. Good luck!

Question: i would like to know what is Morphoea Localised scleroderma? I have some white patches, where doctor told me it is called localised scleroderma, can any one help me with full detail, and where can i can take good treatment in bangalore.

Answer: Morphea scleroderma usually begins as patches of yellowish or ivory-colored rigid, dry skin. These then become hard, slightly depressed, oval-shaped plaques which usually have a whitish or yellowish center surrounded by a pinkish or purplish halo. Morphea is most commonly found on the trunk, but can occur anywhere on the body. About 75% of the time it affects only the skin or underlying muscles and joints.

Question: How many people died from Scleroderma? It is a concern that i might have Scleroderma... does anyone know: A. the different kinds B. how many people died for it.

Answer: Hi.. I understand your concern but you can not just come up with the diagnosis you need to visit your Doc & let him examine you & then you need to do a screening test which if positive then there is a specific bl test to Diagnose scleroderma Scleroderma is a chronic autoimmune disease characterized by fibrosis (or hardening), vascular alterations, and autoantibodies. A.There are two major forms: 1.Limited cutaneous scleroderma (or morphea) mainly affects the hands, arms and face, although pulmonary hypertension is frequent. 2. Diffuse cutaneous scleroderma (or systemic sclerosis) is rapidly progressing and affects a large area of the skin and one or more internal organs, frequently the kidneys, esophagus, heart and lungs, and can be fatal. There are no treatments for scleroderma itself, but individual organ system complications are treated. B.Prognosis is good for limited cutaneous scleroderma, except for <10% of those who develop pulmonary arterial hypertension ≥10 to 20 years. 5-year survival is 90%, 10-year survival 75%. Prognosis is worse for diffuse cutaneous disease, particularly in older age, and for males. Death occurs most often from pulmonary, heart and kidney complications. 5-year survival is 70%, 10-year survival 55%. The cause is unknown. Scleroderma runs in families, but the genes have not been identified. It affects the small blood vessels known as arterioles, in all organs. First, the cells on the inner lining, or endothelium, of the arteriole die off, along with smooth muscle cells, by a process of apoptosis. They are replaced by collagen and other fibrous material. Inflammatory cells, particularly CD4+ helper T cells, infiltrate the arteriole, and cause further damage. Many of the inflammatory and destructive protein signals have been identified, and they are potential targets for drugs that could interrupt the process Take Care

Question: I have scleroderma, and would like to know how to rid the swelling in my hands and feet? I only have this severe swelling in my hands at night and or when I drink. I have to sleep with the house really cold in order for the swelling to stay at a minimum. When I drink, my hands get really swollen and hot. During the day I don't have much of any symptoms. A real drag to not be able to wear ring, as I can't wear my wedding rings, and I am a ring-o-holic.

Answer: Hi Dana, I have a similar problem and swell up so bad at night that I sometimes cannot close my hands and my legs & thighs get bad too. I use pantyhose right now for my legs and it helps a lot and I do ankle pumps (move my foot up and down) - this helps push the edema out of the area. Any form of muscle movement/contraction will help push fluid out of the area. I also do Manual Lymphatic Drainage to remove fluid from the area. This is a link to a video. I have the DVD and it is helpful: http://www.realbodywork.com/lymph/lymph.htm Compression garments work better than pantyhose. You can wear them at night while you are sleeping or at any time. They make compression socks and gloves that decrease edema: This site looks great but I have not ordered from them yet. You might want to bookmark it. SOCKS: http://www.lymphedemaproducts.com/products/socks.html GLOVES: http://www.lymphedemaproducts.com/products/gloves.html I have not received a diagnosis yet - and wish I could find out why I am swelling so much. It really only happens at night and in the shower. Ask you doctor if it is okay to use compression garments to help. I really don't think they are contraindicated for scleroderma. But MLD may be - I am not sure.

Question: what are possible symptoms of scleroderma? im having trouble finding alot of information on SCLERODERMA. Anyone outthere have this disease? what were your inital symptoms and where can i find out some good info to bring to my dr.?? and what are possible complications if left untreated? anyone with scleroderma?? any info on initial symptoms etc would be greatly appreciated!

Answer: Symptoms of scleroderma may include one or more of the following: Raynaud's phenomenon (numbness, color changes and pain in cheeks, nose, ears, fingers and toes due to abnormal sensitivity to cold) Joint pain, swelling, and stiffness of the fingers, hands, forearms, feet, lower legs, and face, (especially in the fingers and knees) Thickening, hardening, and discoloration of the skin Ulcers or lesions on fingers, face, tongue, and inner lining of the cheek Shortness of breath and coughing Digestive and gastrointestinal problems including difficulty swallowing, bloating, and abdominal pain Sexual dysfunction Dry eyes Carpal tunnel syndrome Five particular symptoms occasionally occur together and are clinically recognized as a variation of scleroderma called CREST syndrome. The term CREST stands for Calcinosis (painful calcium deposits under the skin), Raynaud's phenomenon (abnormal sensitivity to cold in the hands and feet), Esophageal dysfunction (problems with swallowing caused by internal scarring), Sclerodactyly (tightening of the skin on the fingers or toes) and Telangiectasia (lesions on the hands, palms, forearms, face, and lips). Scleroderma is called both a rheumatic disease and a connective tissue disease. The term rheumatic disease refers to a group of conditions characterized by inflammation and/or pain in the muscles, joints, or fibrous tissue. A connective tissue disease is one that affects tissues such as skin, tendons, and cartilage. An individual with scleroderma may develop either a localized or a systemic form of the disease. Localized scleroderma usually affects only the skin on the hands and face. Systemic scleroderma, however, affects the connective tissue in many parts of the body, including the skin, the esophagus, gastrointestinal tract, lungs, kidneys, heart, and other internal organs. It is unusual for localized scleroderma to progress to the systemic form. This place is too small to discuss everything on this disease, you may check this link for exhaustive info http://www.healthherbsandnutrition.com/remedies/s/scleroderma.htm

Question: With the proper treatment, can you live through scleroderma? I have heard of people dying of scleroderma and i was wondering if i ever get it, will i be able to survive with proper treatment?

Answer: Ms. Jollie: Yes, should you develop this disease, you will may survive with proper treatment. There are several forms of Scleroderma, some more aggressive than others. My second wife died of Scleroderma in 1986 and I received my diagnosis last fall. I go to the Medical University of South Carolina for treatment, have an excellend rheumatologist and primary care physician, undergo acupuncture and practice meditation. There has been significant progress in the medications available in even the last 5 years, according to my physician in South Carolina. I believe the key to living with this disease is to be optimistic and to be happy. I may be sick, but I don't haven to suffer or live in fear.

Question: how can you stop the itchiness from a disease called scleroderma? my uncle has a rare disease called scleroderma which causes tightening of the skin and severe itchiness.he has tried every thing we can think of and nothing works.can someone please help

Answer: Thats an awful disease, I really feel for you guys. I've looked after some people with that and I wouldnt wish it on anyone. I personally dont know of anything but I found a site. If you contact them they may have some ideas since it's what they are there for. http://www.scleroderma.org/

Question: My mother was just diagnosed with Scleroderma. How serious is it? How can I help her cope? She has a build up of collegen on her stomach. The doctor said it was not systemic, it is limited, but im still very worried about her.

Answer: Scleroderma is an autoimmune disease. Autoimmune diseases are diseases in which the antibodies attack normal healthy cells rather than harmful viruses. I don't have scleroderma but I have sjogren's syndrome, hashimoto's and fibromyalgia (all autoimmune diseases). I can't tell you much except for one thing that is true for all patients with autoimmune disorders: they absoultely need a lot of support and understanding. This is mainly for 2 reasons: 1. Autoimmune disorders usually cause symptoms, not signs (meaning that what the patient is feeling can't be detected by tests like BP, Heart rate...etc). Often this causes the people around patients to not understand the patients, since nothing can be detected externally or through tests. I always have pain and its not like its something easy for people to understand. It's not like I have diabetes where I can just say "My sugar's at 40". No, this is something only I feel and only I know. 2. There is no cure for autoimmune disorders. The person will just have to live with it. Any medications taken will be simply to relieve the symptoms but nothing to fix the actual problem. A couple of things to keep in mind: When it comes to autoimmune disorders (since they're very rare, hard to diagnose, hard to know when there's improvement or no improvement, and no cure), the patient knows more than the doctor. Autoimmune disorders are something you learn to live with. It's a part of daily life. So the patient should learn to know what makes him/her feel better. Support your mom as much as you can. If she says she's not feeling well, believe her. Although she has the scleroderma in her stomach only it can spread and she can also have another autoimmune disorder (since they're so connected), so if for any reason your mom wants to go to a second doctor or do any extra tests, encourage her to. I hope this helps.

Question: What is new lately that's helpful in bad cases of scleroderma? Any helpful info. re diet with it? What medicines are being used?

Answer: My great aunt suffered from scleroderma. What a terrible disease. Her doctor told her she was the longest living case he knew about. She lived over 35 years with it. She never, NEVER, let it get her down. You could tell she hurt and she felt bad, but she climbed the stairs with laundry and cooked at least two meals a day. She never had anyone take care of her. She got bad the last couple years because she was so thin, from her stomach being so terrible. She had no meat over her tailbone. It looked almost like a tail, it stuck out so bad. She developed a bad bed sore, and even after a couple surgerys and wearing a machine to keep it drained, it never healed. She was a true fighter tho. The most amazing person I will ever know. She never complained, she went to womens catholic mass EVERY morning of the year, and was thankful for being alive. She was the kind of person who lived to help others, she donated her body to science, because she wanted to help be a part of why a cure was found for this disease. And her doctor thought she would be perfect because she lived so long with it. Unfortionally, her daughter went aginst her wishes and had her creamated. I can understand I would have a hard time knowing my Mom was being cut up and tested. But I really do believe that is what she wanted to do, and she should have went with her wishes.

Question: For some crazy reasons I keep getting two disease entities SLE and scleroderma mixed up. Any way to separate? As title.

Answer: Refer to it by its full name - Systemic Lupus Erythematosus. Less likely to mix them up that way. Although rheumatologists do tend to treat both.

Question: can anybody suggest medicine for body aches due to scleroderma? my mom is 55 , is a scleroderma patient for the past 8 years , she takes both allopathy and herbal supplements , of late she is suffering too much with right hand pain ....she cannot lift and comb her hair and do anything above the shoulder ......she has calcinosis around her shoulder joints and elbow joints .....can anybody suggest a medicine for a little free movement ......she stays in India for 6 months and in US for 6 months . at present she is in US .

Answer: Has your mother heard of ap treatment? its the idea that you can treat diseases such as arthritis and scleroderma with antibiotics. this treatment does work and know off of first hand experience. i have scleroderma as well and know this may help her. here are a few websites and books to read... all the best. http://roadback.org/ http://rheumatic.org/ http://search.barnesandnoble.com/Scleroderma/Henry-Scammell/e/9781590770238/?itm=3 http://search.barnesandnoble.com/The-New-Arthritis-Breakthrough/Henry-Scammell/e/9780871318435/?itm=1

Question: Scleroderma, anyone out there had a family member die from it? My Mom passed away in 2003 after 13 years with it.

Answer: I didn't have a family member die from it, but a very good friend. It is a horrible disease that my friend had for about the same time your mom did - 13 years. She died last summer from complications of the scleroderma along with having to fight breast cancer. Sorry that you lost your mom.

Question: I would like to know any and all information about Scleroderma.? I am trying to find out anything that I can to help a friend with what we think is a form of Scleroderma. Does anyone have any answers??? Please help if you can!!!!!!! Any little bit of advise, treatment ideas anything like that would be most appreciated.

Answer: Scleroderma is a autoimmune disease. The word means thickening of the skin (unfortunately organs like the lungs,kidneys,& heart can also be affected). There are 2 forms of scleroderma - Limited & Diffuse. The limited form only affects the skin & the diffuse form affects the skin and the organs. It can affect SO much more though like extreme fatigue, digital ulcers,calcionosis, swelling, extreme pain and the list goes on and on. I have the diffuse form and I have found a very good website that I go to frequently. It's scleroderma.org You need to check it out. It also has weekly e-newsletters to keep up to date on the latest treatments and everything. I would recommend your friend going to a rheumatologist and being tested! Best of luck to you & your friend Joy

Question: Have you ever success in antioxidant treatment for scleroderma? Last two years, my mother got scleroderma disease and I found that antioxidant therapy could help her get well. I need to share this experience and share the information. Please joy http://antioxidant-scleroderma.blogspot.com

Answer: I'm not surprised. I have seen natural cures for auto immune for 10 years now, besides myself who had one since a child and have cured myself over 10 years ago. Thanks for this. Also, e mail me for information on how antioxidants work and why they work and how the National Cancer Institute and John's Hopkins medical center advocates and is studying antioxidants from whole raw fruits and vegetables. Disease is connected to nutrition. The body is a garden and when there is balance, there is no room for disease. Here's a news flash... We are not drug deficient.

Question: Will the scleroderma morphia on my stomach stretch to allow full term pregnancy? I have had the spot on my stomach sice age 12, and it hasn't grown any on that side of my belly button since then. now i'm trying to get pregnant and can't. i have miscarried 3 times, could the morphia be to blame?

Answer: no, but you should consult your doctor or be referred to a specialist if you cant get pregnant. SM usually stretches a bit but not much, though it wont cause any anomilies in a pregnancy. the skin around your tummy was made to stretch. dont worry about it, stress is a big factor with hormones, chill out a bit and get your body relaxed and eat as healthfully as possible. good luck to your new baby trials!

Question: Anyone know anything about the disease Scleroderma? My mother is 44 years old and was diagnosed with a disease called Scleroderma about 2 years ago. It is a horrible thing and she turned hard from her fingertips to her elbows and her legs also turned hard. She is now going to Duke University for Chemotherapy and I was just wondering if anyone else knows someone with it.

Answer: Systemic sclerosis is commonly called "scleroderma" because the most obvious symptom is "hard skin." Being a systemic disease, however, it's more than skin deep. The fibrosis, or scarring, it causes can occur anywhere there's connective tissue in the body, and that's almost everywhere. Add to that the malfunction in and damage to blood vessels it can cause, and it seems like a sure recipe for disaster. Even though most systemic scleroderma patients will not die from complications of their disease, most of us struggle to live with the affects. Profound fatigue is quite common, and you can imagine how that impacts someone's life. We frequently have the joint and muscle pain of secondary fibromyalgia, and almost all have some gastrointestinal involvement - at the very least, GI reflux. Raynaud's phenomenon is constant in about 97% of us - cold and stress cause blood vessels to spasm shut, cutting blood flow to hands, feet, nose, ears, and tongue. And these are the "minor" symptoms. When it gets dangerous, scleroderma can cause fibrosis in the lungs and heart, further into the GI tract where it can cause malabsorption of nutrients, in the kidneys and it can affect the pulmonary artery. Treatment is getting better - kidney complications used to be the number one killer in scleroderma and are now very treatable with ACE inhibitors. But not all treatments work for everyone, and some just have limited usefulness. The best help you can be for your mom is to be there, whether it's going to appointments with her, cleaning house, making dinner, or just to listen when she needs to talk about her pain and fears. Scleroderma becomes like a predator to us patients, lying in wait for the time it can strike in another area or in another way. Again, though it doesn't happen to most of us, we live knowing that it can kill us. It's not an easy way to live - help your mom concentrate on positive things and to ride the ups and downs by looking forward with hope. You can find extensive information about all the forms of scleroderma at the Scleroderma Foundation website - http://www.scleroderma.org. I'd also recommend calling them at 1-800-722-HOPE for their free booklet, "Understanding and Managing Scleroderma," written in part by Dr Maureen Mayes, author of "The Scleroderma Book," another good source of info. The Scleroderma Foundation has numerous live support groups in the US where you and your mom could meet and talk to other patients and families about coping. They also directly or through their chapters sponsor local and regional educational meetings to not only benefit patients, but to spread information to health care providers on the latest research and treatments. Also, the SF funds over $1 million each year in peer-reviewed scleroderma research. Your mom may also be interested in one of the many places to get support online. Search "scleroderma" on Yahoo and you'll find tons. Just remember to take care online, as with any other "unofficial" contact.