Battling Scleroderma: One Woman's Battle with Scleroderma

Scleroderma is a serious disease that can be fatal. It is an autoimmune disease that causes the body's tissue to be attacked by its own immune system. There is a sudden build up of collagen in the person's tissue and skin. This disease is considered rare and may go on undiagnosed if your doctor only sees the symptoms as individual problems and not as a whole.

This article is dedicated to my aunt, Margaret Pamela Price. She was first diagnosed with this scleroderma early in 2005. She passed away at the age of 47 on July 8th 2007. Her death was due to a massive heart attack and stroke brought on by the side effects of scleroderma. For many years before her diagnosis, she suffered from arthritis, carpal tunnel syndrome and lung disease. After many years of showing symptoms but never having the symptoms linked to one another she became very ill in late 2004. She was hospitalized numerous times. By the time she was diagnosis in 2005, she had spent almost a year in the hospital. The disease had taken a toll on her body. It had damaged many of her internal organs including her heart, esophagus, lungs and kidneys. In 2005 the doctors installed a pacemaker. Later that same year she started receiving dialysis treatment for kidney failure. She was put on dialysis treatments three times a week. Each treatment lasted four hours. By the end of 2005 she had lost over 100 pounds. She had started to show signs of progress by the 2006 and by 2007 she had even gained back to a healthier weight. Although she was still on dialysis she was beginning to live her life again and was able to do many things that she thought she would never beable to do again. She was able to go on short vacations with her husband, go fishing, boating and even motorcycle riding. Although her disease had slowed her down she never gave up on life. She had even spoken with her doctors about a possible kidney transplant.

I will never forget the phone call I received from my mom on July 7, 2007. It was 7p.m. when my mom called to tell me, my aunt had been taken to the hospital. My uncle had discovered her unconscious and not breathing. A few hours after the ambulance rushed her to the hospital, the doctors had discovered she had suffered a massive heart attack and a stroke. Because of the lack of oxygen to her brain she was also considered brain dead. I drove all the way across the state of Florida to spend the her last few hours saying goodbye. At approximately 5:30p.m on July 8th 2007 she let her suffering go to ventured to a better place.

Here is a little more insight about scleroderma:

Scleroderma comes in two forms, localized & generalized:
Localized or sometimes called limited scleroderma mainly affects a person's skin, causing it to become hard. This usually occurs in patches. The hard patches of skin turn a white and purplish color. The hardening of the skin can occur on a persons arms, legs, and face. Localized scleroderma is not usually fatal. Some physicians refer to the symptoms as C.R.E.S.T. The "C" represents Calcinosis which is the formation of tiny deposits of calcium under the skin. The "R" refers to Raynaud's phenomenon : when the artery vessels that supply blood to your toes, fingers nose, tongue and ears begin to turn blue, white and red. This will happen in extreme cold or heat and can also be brought on by a persons emotional state. The "E" refers to esophagus disease. This is usually characterized by poor muscle function in the lower portion of the esophagus. The individual may suffer from severe heartburn due stomach acid back flowing up the esophagus. This can make passing food very difficult. The "S" represents Sclerodactyly. This refers to the thickening of skin on the fingers and toes. The tightness and thickening of skin can cause limited mobility in the individual. Simple task such a making a fist can be hard and painful. The "T" represent Telangiectasias
which are tiny red areas that usually form on the face, hands and mouth.

Generalized scleroderma can affect many parts of the body, not just the skin. It is categorized into two types. The first type is called limited scleroderma occurring gradually affecting the skin and some internal organs, such as the lungs, intestines and esophagus. The diffuse type of generalized scleroderma can develop much more rapidly. This can affect the organs more severely. When the internal organs become damaged this can lead to severe heart problems, kidney failure and lung disease.

The cause of scleroderma is unknown. There is no cure or specific treatment for the disease. Treatment will vary in each individual case depending on the symptoms the individual has. Most physicians will try to treat the individual symptoms. Because the disease is rare and symptoms vary in each individual diagnosis is difficult which can lead to misdiagnosis or even undiagnosed. According to the scleroderma foundation there is only about 300,000 individuals in the United States who have scleroderma. This disease can affect children as well as adults. Most individuals can continue to live a long life while receiving treatments. However there are always exceptions to the rules when it comes to this disease, each case should be handled differently according to the severity of symptoms.

I wrote this article in hopes to better educate the people on the signs, symptoms and overall diagnosis of scleroderma. Please refer to the following websites for more information about scleroderma:

WebMD
Medterms
Medicine.net
Scleroderma.org