FAQ - scleroderma, limited
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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.
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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.  (+ info)

Mom has been diagnosed with limited scleroderma?


Is anyone familiar withn this disease? She has had all the symptoms for about 3 yrs.
You have not mentioned the location.

She first had constipation ploblems for awhile now she has diarrhea.
Her hands look leathery she cannot be in hot or cold her finger tips turn blue or almost white. She has some trouble swallowing lots of heartburn has had that a long as I can remember because she is never without tums...she has high blood pressure and palpitations. We go in for a upper and lower GI monday. I hope it has not progressed very far.
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This is a site I found. I hope it helps with the definition.
http://www.sclero.org/medical/about-sd/types/systemic/limited/a-to-z.html#limited  (+ info)

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?
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Do a little more web research and contact those who're available via internet.
God bless.  (+ info)

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.
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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.  (+ info)

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?
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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  (+ info)

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.
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  (+ info)

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.
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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  (+ info)

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.
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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.  (+ info)

How do i order limited air jordans online?


I always am late to order these limited shoes that sell out within minutes of being available. Does anyone have any tips about what time exactly the shoes would hit online stores or how to wait for a pair until it becomes available online?
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http://www.solecollector.com/forums/index.php  (+ info)

How much are the limited edition Babycakes shirts at Warped Tour?


I need to know how much it costs to get them.
I'm asking about the limited edition ones that they'll only have 200 of.
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they are 20 dollers i got one
and its ok they had left overs at like 6 pm
and it ends at like 8
so you dont have to worry
and also paul griffiths is there at 2!
when you get there you should get to the bby cks tent
you need to get a size smaller
the shirts are pretty big  (+ info)

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