Scleroderma Awareness Speech

Teresa Nadeau

This is the text of a speech given by Teresa Nadeau, a Foundation member from Montgomery, Alabama, during a special even tin June. She received a fine response from this speech, and we include the full text here because this story tells of her struggle with the disease and how she lives well with it.

“I was very honored last year when the Scleroderma Foundation asked me to be one of their six national spokespersons. My most important duty in this role is to promote Scleroderma awareness when I have the opportunity. Our photographs and a small bit of information about us and how the disease has affected our lives is used in advertising campaigns and fundraising publications. Because I have a very extreme case of scleroderma and I look so different than the average person, people often wonder what’s wrong with me and sometimes they ask.

“When I tell them “scleroderma,” their first response is “What?” So I would like to thank Karen Coffey and Renae Williams for giving me this opportunity to speak to you about scleroderma as June is National Scleroderma Awareness Month.

“Bear with me through this. This is my first public speech. Because of my disease it is hard for me to speak clearly so if you can’t understand something I say, just ask me to repeat it.

“I’ve handed out a packet of information for each of you. Please pass it on to a friend to read before you throw it away. I’m also passing around a picture of myself. Not to show you how cute I was way back when but to emphasize how destructive scleroderma can be. The photograph was taken a few months after I was diagnosed. My appearance changed from how I looked in that picture to very similar to how I look today in just eight years.

“When I was 27 years old I was living in Mobile and I had a pretty good life. It was fun and I looked forward to every day. I was newly married. We had recently bought a house. I was teaching third grade at a great school. I had lots of friends. I had a lot of interests and hobbies. And, I had a ton of energy.

“I worked out at a gym two days a week just to stay healthy. In the fall and winter I loved to canoe, camp and tromp around in the woods. In the spring and summer, I was a beach girl. I also loved to fish the Mobile Delta and the Gulf of Mexico. My passion was any kind of art or craft project. I was a pretty good cook. I had a nice camera and I worked on my photography skills. I was learning how to call turkeys. And, I could out throw most of my friends with a Frisbee. All of these things were things I loved to do and were so much a part of my life and who I was. These are some of the things scleroderma took away from me.

“It was during the summer on my much deserved break from teaching kids when I woke up one morning and both of my knees were killing me. I couldn’t think of anything I had done to make them so sore and they weren’t bruised but from that day on my life began changing drastically. I went to my family doctor. He diagnosed me with sun poisoning, I suppose because of my tan—it was summertime—but I knew his diagnosis could not be right.

“The pain in my knees never let up and moved down my legs to my Achilles tendons. My feet started swelling and by the time school started in the fall, I could only wear flip-flops and sandals. It hurt to walk and with my knees so inflamed it was hard to get up from a chair. I went to another doctor. He said arthritis. It seemed a more likely diagnosis but the symptoms were so intense and the onset so quick, I just wasn’t sure.

“In October, I went to a rheumatologist. He gave me the news. I had scleroderma.

Sclerowhat? I had never heard the word. I wasn’t even sure what he was saying. I asked him to write the word for me. I can’t remember what all he said to me that day. I just remember the grim look on his face. When I got home, I looked up the word in my medical dictionary. The last sentence of the definition said, ‘…a progressive disease, usually fatal.’ They were the most devastating words I had ever read. On my next visit with the doctor he told me he knew very little about the disease but he probably knew more than anyone else in town. He told me very little about what to expect. I guess he didn’t know. He did advise me to get my affairs in order.

“I remember the last game of tennis doubles I played with my girlfriends. Every time the ball hit my racket pain seared through my hand. When I walked off the court I knew I would never play again. The last time I went fishing I couldn’t really grasp the rod. I laid it down in the boat. I didn’t want to cast my favorite rod and reel overboard. I jumped off the end of a pier one day and thought I would drown before I could make it back to the ladder. I had not realized how tight the skin had become under my arms and across my shoulders. I couldn’t swim anymore. My hips and thighs became too tight to walk up stairs or take big steps. Hiking, canoeing, camping and turkey hunting were out.

“By this time I had already quit teaching school. I was too sick to keep up with the demands of helping 20 eight and nine year-olds all day. I worked at a less physically demanding job for a couple of years until I was no longer able to dress myself in the mornings or drive myself to work. I had never been a depressed type person but this was a very hard time in my life.

“The disease progressed rapidly. Every day there was something new to deal with. Not only did the pain not let up but it spread to more and more parts of my body. Eventually it got to the point that if someone just bumped me, it would bring tears to my eyes. I developed multiple ulcers on my fingers and toes. As the skin tightened it itched and burned.

“My skin split open at my elbows, across my knees, down my shoulder blades and my lower spine. It was not unusual to have 30–40 ulcers at a time. As my face tightened, it felt like the skin was splitting across my cheeks. I would actually touch my face then look at my fingertips expecting to see blood. As my fingers bent and curled the pain would keep me awake at night. My hands were so swollen and inflamed most people thought I had been burned. As my jaw receded my teeth became loose and I had trouble eating. My esophagus became so small I could hardly swallow. I was very sick and I was freaking out. What was going to happen next?

“As I said before, I had a lot of friends or I thought I did. Now, I heard about the cookouts and get-togethers but my husband and I weren’t invited. The word was, ‘it made them feel bad to see me.’ My face had changed so drastically, I scared little children. People I knew didn’t recognize me. My thick wavy hair was thin and scraggly. I couldn’t brush it. I couldn’t bathe myself, dress myself or feed myself. I couldn’t get in or out of the bed without help. I got to where I was too weak to do any arts and crafts. I couldn’t even sign my name.

“My family and I thought I was dying. I felt like I was dying. We were all getting ready. But one day as I lay in the bed as I often did back then, I got a message from God. I didn’t hear Him speak to me but I just knew at that moment that I wasn’t going to die. Not right then anyhow. From that day forward with herbs and His grace I began to get better. The pain began to lessen. The lesions healed. I had more energy. But the rampage of scleroderma had wreaked havoc on my body. Everything had changed. My career was over. I couldn’t take care of myself. My marriage had ended. From that day on I knew I wasn’t going to die from scleroderma, I was going to live with scleroderma.

“I’m not telling you all this to make you feel sorry for me. I have already felt sorry for me and I’m over that. I’m telling you this to help you understand what an ugly and devastating disease this is. I’m one of the lucky ones. Many victims die within the first five years. I’ve had scleroderma 23 years.

“And today, once again, I’m living a pretty good life. Even though I am, in many ways, healthier than I was years ago, scleroderma is a chronic progressive disease and I still fight it today. But I look forward to every day. I’m part of a big wonderful family and I have many true friends. I am blessed with great helpers who take good care of me. I can walk around my house without a wheelchair. I can draw and paint. I can type on the computer and occasionally I can feed myself. Life is good.

“So what is scleroderma?

“Scleroderma is a chronic often progressive autoimmune disease in which the body’s immune system attacks its own tissues.

“A good explanation of how scleroderma works is, in a healthy person if they cut themself, their body produces enzymes and proteins in response to the wound. Collagen forms to close the skin and they develop a thickening of the skin, a scar, which may or may not be seen when the cut is healed. With scleroderma, the body thinks something is wrong and it sends enzymes and proteins all over the body producing excessive collagen in the skin and soft tissues. The scar tissue builds up and forms “hard skin,” the literal meaning of scleroderma. In some cases serious damage can occur to the internal organs.

“My elbow joint works but because the ligaments and skin are so tight my arm won’t stretch out. Unfortunately, many of my other joints have been severely damaged.

“Scleroderma can vary a great deal in terms of severity. There are two types of scleroderma, Localized and Systemic.

“Localized scleroderma, the least severe, usually just affects a patch on the skin.

Systemic scleroderma has two forms. Limited—which mainly affects the skin and small blood vessels—and Diffuse, which, along with the skin and small blood vessels, also affects internal organs. This form can have the most severe effects.

“I have a very extreme case of Limited Systemic scleroderma or CREST. CREST is an acronym that means I have small rock-like deposits of calcium in my tissues. I am cold sensitive. I have trouble with my esophagus. I have hard skin and I have teleangiectasias, or red splotches on my skin. There is a good explanation of all of this in the Overview pamphlet I gave you. Although medicines can sometimes help treat symptoms, there is no cure yet for scleroderma.

“At this point in your lives I am sure most of you have already selected your favorite charities and the worthy causes you like to support. But at this time, I would like for you to consider adding the Scleroderma Foundation to your list.

“The Scleroderma Foundation has a three-fold mission. It is to help patients cope with scleroderma, to promote public awareness of the disease, and to stimulate financial support for research to find the cause and cure for scleroderma.

“It is estimated that there are approximately 300,000 persons with scleroderma in the United States. Statistically, approximately four times more women than men develop the disease. Scleroderma can develop and is found in every age group but its onset is most frequent between the ages of 25 to 55.

“Because it is such a rare and little known disease, scleroderma doesn’t get near the funding of other well known diseases. However, last year the Foundation was able to give out over a million dollars in grants to fund research. Research is the basis for hope for people with this disease. We need your help. Information about how to contact the Foundation is included in the materials I gave you. Your support of the Scleroderma Foundation will help with research and help find a cure.

“Thank you for your ears.”

If you would like a copy of this address, please contact Teresa Nadeau at tnadeau@knology.net.