Scleroderma is classified as an autoimmune disease. This means that a person’s immune system works against itself. The normal immune system protects the body by fighting off foreign invaders such as viruses and infections. In an autoimmune disease, the immune system mistakes a person’s own tissues as foreign invaders and sets up a protective attack that backfires to cause problems.
In scleroderma, cells start making collagen as if there were an injury that needs repairing. The cells do not turn off as they should and end up making too much collagen. The extra collagen in the tissues can prevent the body’s organs from functioning normally.
Scleroderma is a chronic illness that will not go away. However, it is manageable. Treatment can make you comfortable. It can help to control the disease and keep it from getting worse. Unfortunately, there is no single treatment for the disease because everyone’s experience with the illness is different.
The severity of Scleroderma varies a great deal from person to person. For some people, it’s a nuisance. For others it can be life threatening. For most people the illness becomes more or less severe over time. Most people experience times when the illness improves and even goes into remission. Your treatment will be based on your symptoms.
Scleroderma has few rules about who gets it and why. It’s a rare disease and fewer than half a million people in the United Stats are affected. Some experts say that for every 7 people with Scleroderma, 6 of them are women. The most common age to develop Scleroderma is between 35 and 50 years of age. Young children and older adults can also develop Scleroderma.
Like with any change, it will take time to get used to it. There is a difference between being a victim suffering from an illness and being a person living with a disease. The word victim brings to mind being passive and helpless while the term person living with brings to mind an individual who is influenced by an illness but not defined by it. It denies a sense of acceptance of the illness with the idea that you continues to be the person who you have always been. You cannot let yourself be defined by Scleroderma. This is a hard goal to achieve, but will help you in coping with the unpredictable and uncertain nature of Scleroderma. Your family, your doctor, your priest, minister or rabbi, or a counselor can help you with this goal.
The earliest symptoms of Scleroderma are often fingers that become very sensitive to cold and/or stress and fingers that sometimes change color. These changes in your fingers are known as Raynaud’s and are caused by the excess collagen of Scleroderma that narrows blood vessels and reduces the flow of blood to body tissues and organs.
Limited Scleroderma is the milder form of Scleroderma and is more common among Caucasians. Patients with Limited Scleroderma, also know as CREST, usually have only thicknesses of the skin on the fingers. The letters in the word CREST stand for the symptoms of the disease. Everyone is different and has a different pattern of symptoms.
Generally CREST does not involve other body organs, but scar tissue in the lungs can build up.
Diffuse Scleroderma is the most involved form of Scleroderma. Thickness of the skin on the arms, legs and trunk occur, and internal organs are more likely to be involved. Tightened skin makes movement of some joints difficult. People may experience trouble bending fingers, hands and joints. Also, they will also have a smaller mouth opening caused by tightness on the face. This makes it difficult to open the mouth wide and makes it hard to close the mouth completely over the teeth.
A person who has Diffuse Scleroderma may have areas of the skin that are lighter and darker. Some will lose hair, have dry skin and sweat less all due to damage in the skin. Diffuse Scleroderma can cause changes to the gastrointestinal tract, heart, lung or kidneys.
You have a chronic illness that won’t go away. Depending on the severity of your Scleroderma you’ll be seeing more and more specialists and need to get the most from each doctor. In order to do this:
If you don’t understand something, don’t be afraid to speak up. Doctors sometimes forget their patients don’t speak the same language.
You should discuss this with your doctor. It takes some courage, but it will open up communication. Another way to get your doctor to listen is to be brief and to the point.
Ask for more time when you make an appointment. Don’t wait until you arrive for your appointment. You should expect to pay extra because the time you’re using can’t be used by another patient. Also, make the most of your time with the doctor by going to the office prepared. Bring a written list of questions and concerns. Hand the list to your doctor when you arrive and be sure the questions are answered before you leave.
Unfortunately, there is no way your doctor can know for sure. You made need to try a number of medications before you find the best one. This trial-and-error method can be costly. To keep down costs:
Plan to be dressed. It’s hard to feel comfortable talking in your underwear or an examination gown. Also, sometimes doctor – patient personalities just don’t fit. If you’ve tried to open up communications and it hasn’t worked, it might be time to find a new doctor with whom you are comfortable.
By taking charge of your illness, you will feel more in charge. Having a sense of control and having positive things in your life can help you to cope better with your illness and have a better quality of life. Your illness is only one part of your life. To really take care of yourself you need to balance the more difficult parts of your life with more positive things such as fun activities and physical exercise. These will help you to have a more positive mental outlook which may help you to cope better with your illness,
Unfortunately the less active you are, the more your body becomes weak, stiff and out of shape. This can make pain and fatigue even worse. Ask your doctor about what exercises or flexibility and strengthening programs might be good for you. He or she can tell you what level of activity is right for you. Even if your doctor recommends against exercise, think about how you can spend time out of bed doing activities you enjoy.
If your doctor has approved an exercise program for you, you should set aside time for it and exercise several times a week. Start slowly. For the first few times, you might limit your activity to warm-up exercises only.
Yes, there is. Start slowly with flexibility and strengthening warm-up to get ready for more intense exercise later on.
No you should not. You should try to be more physical in your everyday life.
Fatigue is a frequent problem and can seriously alter your sex life. Like any activity that is important to you, you may need to pace yourself and rest up to continue your sex life.
The vagina can become dry with less lubrication during arousal. This can make sex uncomfortable or even painful. Vaginal lubricants can be bought in most drugstores and are very helpful. It’s important to look at other causes of vaginal dryness before blaming Scleroderma. Menopause and the drop in female hormones that goes with it can also cause vaginal dryness. If this is the case, an estrogen replacement in pill form or in a vaginal cream may be helpful.
Some women find sex painful because they can’t find a comfortable position. Symptoms of reflux (such as heartburn) can be made worse by lying flat and having the weight of a body on top. Joints may feel stiff and not move as easily. A warm bath may help. Being open to new positions or activities are also important.
The penis becomes erect when more blood is directed to it than drains from it. The part of the nervous system that is responsible for this is called the parasympathetic nervous system. There is evidence to show this part of the nervous system is damaged in Scleroderma.
Vascular problems may also be responsible. The blood supply to the penis can also be changed.
Once damage to nerves or vessels happens, it may not be possible to reverse it.
Problems with erections can also be caused by medication side effects. Calcium channel blockers are often used to treat Raynaud’s phenomenon. These medications improve the circulation to the fingers but decrease circulation to the penis. Discuss this issue with your doctor before you stop the medication.
Medications such as Viagra can improve the circulation and improve erectile dysfunction. Other treatments such as penile implants may also be helpful. You may want to discuss the alternatives with your doctor or be referred to a urologist.