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Laurie (Bioteach): CREST Syndrome

This condition of mine has put us all through some hard times.

I am forty-nine years old. I have been happily married to my high school sweetheart for almost thirty-one years. We have two grown, beautiful and successful daughters and the greatest gift of a granddaughter.

My first symptoms of this disorder began with Raynaud's phenomenon when I was in my mid twenties. We used to think it was funny how my fingers would turn purple in the shower, then red and white in the most amazing, colorful display. At that time, I saw a physician who said I might have lupus or scleroderma. My mom was constantly being tested for lupus at that same time.

One doctor to the next could not seem to agree, but I knew about lupus. What I read about scleroderma did not seem to apply to me. The doctor said there was really no treatment available. As I had no medical insurance, I opted not to pay for the tests. The advice from reading about this disease was to quit smoking and move to a warmer climate. Because I have never had a cigarette in my life and lived in the desert, I figured that was all I could do for myself.

Once I understood what arterial spasms were, I decided they were not good for me and kept myself reasonably warmer in an effort to prevent them. Typical arthritis-like complaints accompanied my Raynaud's phenomenon, but otherwise, I was doing okay. I continued my life as a Jazzercise instructor. My daughters got involved in figure skating, and then keeping myself warm became more difficult.

I had one bad season with fingertip ulcers, and another physician said I probably had scleroderma. That is as far as the discussions went. I later became a teacher and between ice skating and teaching, our family life was busy. I had some sort of nuisance disease that, just barely, slowed me down.

About eight years ago, our life was complicated with a move to a new mountain community to assist in advancing my skaters. We lived and trained ice-skating in Lake Arrowhead, California. Eventually, the stress of the competitive ice-skating as well as the residence and job change really took its toll on me. The Raynaud's phenomenon was really bad by then. I had good medical insurance, so my new doctor pushed forward to identify and treat my condition.

I was definitively diagnosed with CREST, with the C, R, E, and T all clearly present. The antinuclear antibodies, ANA tests, clearly and repeatedly, suggested CREST. The aching joints and muscle fatigue were my next symptoms, followed by degenerative spine disorder, a herniated disc, difficulty breathing, and chest pains. My doctor tried to treat everything at once and was actually quite successful at it.

Although my blood pressure is low, high blood pressure medicine helped with the Raynaud's phenomenon. Physical therapy and anti-inflammatories helped with the pain. Lung function tests came out okay. My cardiac tests showed good arterial flow, but they also revealed damaged sections of my heart, specifically, the damaged anterior left ventricle and non-reactive septum. The cardiologist casually said it must have been from my heart attack to which I vehemently replied that I had never had any heart attacks.

He thought I was just a silly girl, who did not know her own body, but fortunately, my general practitioner (GP) was a listener, a thinker, and a problem-solver. Three years ago, some superficial blood clots lead to two pulmonary embolisms and my doctor had a hard time convincing the specialists they had actually occurred. Surgery on my leg to clean out the clots seemed to go well.

About two weeks later, I was rushed to the emergency room. A series of weeks in various hospitals got me out of danger and on blood thinners, which I still take to this day. Trips to have my esophagus dilated have become routine, and I take all the GERD medicines to try to prevent further damage.

I suffered a debilitating depressionthat knocked me out of reality for a while following my hospital stays, but medication and an uncommonly supportive family and friends got me through. I do not know how my husband and daughters have held up so well. This condition of mine has put us all through some hard times. God bless Taylor, my little red-haired angel, as she can always make me smile.

I have had help from too many people to mention, but they are all part of where I am today. I can still work, and I love teaching high school biology. Sometimes I get way too tired to function, but everyone involved with me seems to understand.

Currently, I take many medications, as appropriate. Being a well-informed patient and keeping track of all my own conditions, treatments, and current complaints, helps my doctors. I am tired a lot lately and am experiencing serious problems with intestinal motility, which a specialist is investigating.

My biggest concerns are for my loved ones and their health. My sister has fibromyalgia and lymphoma. My mother has battled the typical autoimmune nightmare of not having a clear diagnosis of anything but arthritis and a lot of questions. My oldest daughter has unexplained rashes and joint pain, while my youngest has psoriatic rheumatoid arthritis and is currently being tested for anklyosing spondilitis. She had to quit ice-skating due to the pain. Although our diagnoses are all different, they all seem to be autoimmune related.

I enjoy every day that I am gifted, and I am eternally grateful for the love shared with me by so many. It sounds crazy, but in many ways this horrible disease has been one of my life's greatest blessings. Thanks for reading my story. Maybe it will help someone else.

~ Update 08-03-07 ~

My story appeared in Voices of Scleroderma Volume 1. This is just an update.

I am still here and working as a high school Anatomy and Physiology teacher. I love my husband, daughters, granddaughters, and everyone else that I know! I still have all the standard symptoms, just managing each one as they come and go.

I suffered a severe depression including hospitalization and electro-convulsive therapy. I'm not sure if my depression was related to my scleroderma or not, it doesn't really matter.

I enjoy every day that I am gifted with and love life. My best wishes and prayers go out to everyone suffering this odd disorder.

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This Story is Featured in Voices of Scleroderma Volume 1

The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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