Have you experinced your mouth getting smaller,and your fingers curling up? what have you done about your dental problems? i was diagnosed 4 yrs ago. i have experienced those changes but have found treatment.
www.roadback.org Scleroderma (sklere-o-DER-muh) is a rare, progressive disease that leads to hardening and tightening of the skin and connective tissues 鈥?the fibers that provide the framework and support for your body. Scleroderma usually starts with a few dry patches of skin on the hands or face that begin getting thicker and harder. These patches then spread to other areas of the skin. In fact, scleroderma literally means "hard skin."
In some cases, scleroderma also affects the blood vessels and internal organs. Scleroderma is one of a group of arthritic conditions called connective tissue disorders. In these disorders, a person's antibodies are directed against his or her own tissues.
Researchers haven't established a definitive cause for scleroderma. It's more common in women than in men and more common in adults than in children. Scleroderma can run in families, but in most cases it occurs without any known family tendency for the disease. Scleroderma isn't considered contagious or cancerous, but this chronic condition can greatly affect self-esteem and the ability to accomplish everyday tasks.
Signs and symptoms
In addition to thickening and hardening of your skin, scleroderma can cause your skin to lose its elasticity and become shiny as it stretches across underlying bone. Other signs and symptoms may include:
Numbness, pain or color changes in your fingers, toes, cheeks, nose and ears, often brought on by cold or emotional distress (Raynaud's phenomenon)
Stiffness or pain in your joints and curling of your fingers
Digestive problems ranging from poor absorption of nutrients to delayed movement of food due to impaired muscular activity in your intestine
Sores over joints, such as your elbows and knuckles
Puffy hands and feet, particularly in the morning
Causes
Collagen is a fibrous type of protein that makes up your body's connective tissues, including your skin. Scleroderma results from an overproduction and accumulation of collagen in body tissues.
Although doctors aren't sure what prompts this abnormal collagen production, the body's immune system appears to play a role. For unknown reasons, the immune system turns against the body, producing inflammation and the overproduction of collagen. In addition to its effects on your skin, some types of scleroderma affect tiny blood vessels and can affect almost every organ.
Types of scleroderma
Doctors classify scleroderma into different subsets:
Localized scleroderma
This type of scleroderma is limited to your skin and the deep tissues below your skin. It includes the following subclassifications:
Morphea. In this form, oval-shaped thick patches appear on your skin 鈥?white in the middle, with a purple border. These patches are most likely to occur on your torso, but they can also appear on your arms, legs or forehead.
Linear scleroderma. This form results in bands or streaks of hardened skin on one or both of your arms or legs, or on your forehead.
Systemic scleroderma
This type of scleroderma affects not only your skin but also your blood vessels and major organs. It's also called systemic sclerosis and includes the following subclassifications:
Diffuse cutaneous systemic sclerosis. This type affects the skin of your fingers, hands, arms, legs, face, neck and trunk. It can also affect internal organs, such as your lungs, heart, kidneys and gastrointestinal tract 鈥?including your esophagus. It can hinder the functions of your digestive system, create respiratory problems and cause kidney failure. When left untreated, systemic scleroderma may be fatal within several years of onset.
Limited cutaneous systemic sclerosis. This type involves the skin of your fingers, lower arms and legs, face, and neck. A variation is called CREST syndrome.
Sine scleroderma. Some doctors may describe one variation of systemic scleroderma as sine scleroderma, which can be similar to either limited or diffuse scleroderma, the difference being that this form doesn't affect your skin.
Overlap syndrome
This is diffuse or limited systemic sclerosis with features of one or more of the other connective tissue diseases.
Undifferentiated connective tissue disease
This has features of systemic sclerosis, but there are no clinical or specific laboratory findings to make a definite diagnosis. One of the problems you describe with your hands is "contractures". This is due to your flexor muscles and tendons overpowering your extensors. You should see an Occupational Therapist who can loosen the fingers and prescribe sleep braces/splints. She will also show you excercises you can do during the day. Please do not delay or they will become permenant and only surgery will release them. Your mouth is not becoming smaller.. Your facial muscles are undergoing the same process as your hands//fingers. The same extensor//flexor principles apply throughout the body. And your flexors always win because there is more energy required to extend our joints than to flex them. I am sure you have seen old people or handicapped people who look all curled up. This is why.
You need a good physical therapy team, consisting of a physical therapist for excercising and strengthening. An occupational therapist for your arm and upper body strengthening. They will also be able to help with living aids which will help with dressing, cooking etc. You also need a "speech" therapist who will help with the obvious swallowing and eating problems you have. Your illness effects your ability to swallow safely. It makes you lose motility which is what our esophagus (swallow tube) does. You could choke or take foods and drink into your lungs.
Please see a Dr ASAP. If you can't afford one go to a large medical center or cathloic hospital where they are required to help people regardless of insurance, or as in the case of catholic services they do charity works for those who have no insurances. You should have a good physiatrist muscle specialist and neurologist caring for you. Kind of in charge of it all.
These Dr's are found at the larger hospitals and medical centers. As an FYI a teaching hospital is going to be up for all the latest treatments on illness. Smaller places are more personal, but you are limited to whatever the educational level your Dr has. A good resident/resident-fellow Dr will be more apt to try something new.
When you are fighting for your life you will try anything.
Good luck and God Bless and keep you. my mom has had sd for 23 years - and she has these problems too. as far as dental - her dentist has been really good with figuring out how to shave down her dentures so they fit right and can go in and out of her mouth easily - for now it's ok - seems to be shrinking at a slower pace now. as far as her fingers - she has really just had to learn to adapt to things - my dad made some changes around the house - for example he put l shaped door handles on doors she uses alot, because the regular round ones were difficult...you'lll earn different tricks -
my best advice - don't let it beat you - you are in charge! my mom doesn't give up - and still does alomsot everything she did 30 years ago - if she asks for help with something you know she has tried to do it herself a few times and can't -
you're in my prayers |
