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Susie: CREST Syndrome

He handed me a brown paper towel and told me to quit crying because I was one sick girl!

Rose for Susie by Sherrill Knaggs, ISN Artist I have had CREST syndrome for the past eight years. My specialist is Dr. Frederick Wigley, from Johns Hopkins. Early on Dr. Wigley told me he would be my coach. I believed him and have learned many things about my health and mental health since being at Johns Hopkins. They truly have helped me.

I am not going to say I did not have initial shock after learning I had scleroderma. My first doctor told me I had only fifteen years to live! I started to cry in his office. He handed me a brown paper towel and told me to quit crying, because I was one sick girl! After that experience, my primary care doctor said he would transfer my case to Johns Hopkins, because scleroderma is so rare.

What followed after the first diagnoses was rheumatoid arthritis, acid reflux, neuropathy in both feet, Raynaud's, Sjogren's syndrome, skin ulcers, itchy skin, nerve damage in my elbows and hands, a bout of gangrene in one finger, shortness of breath, high blood pressure, and osteoarthritis.

I walked with a cane for about six months, but through medical technology I now only take one pill and no longer use a cane.

I went through a research project on Depression and Scleroderma, and was able to re-focus my pain, and think about other places, warm places. This really helped my thinking. Having daily pain is hard on your brain, and the good seratonin to keep in place with daily pain. I was able to switch this around. I am not saying I am pain free, I still have daily pain, but I no longer focus in on the pain.

Initially, I had taken a medical leave of three months. I could hardly walk up and downstairs, and I was out of breath all the time. So, my doctor told to take a leave from work and see how not working would help me.

In the beginning, things were going very well for me healthwise when I wasn't working. The stress from working outside the home was getting to me, and I was becoming so disabled. So, when it came to applying for disability insurance, I had made the decision of not going back to work.

I filed my claim, and then waited for eleven months. After nearly a year of not working outside my home, I was so down and out about not receiving disability insurance, that I contemplated returning to back to work.

I finally decided to go back to work, but not back to my original job. I found something I would enjoy doing and that did not require overtime. I also wanted something in the same field, but not as stressful as before. With stress we can really harm our bodies, especially with having several autoimmune disorders.

I have been working for nine months now, as a mental health social worker. I love my job but I really can tell when I have had a stressful week. It's not easy working outside the home, there's pluses and minuses to it. Even though my doctor gave me the okay last year to quit working, he feels working is better for me mentally.

I also babysit my grandson plus clean my home and tend to my gardens. I keep very busy, because otherwise I tend to dwell in my pain. I'm on many medications to treat my symptoms and to help with my arthritis.

I have met all sorts of wonderful people since being diagnosed and I pray for them. Some of my scleroderma friends have diffuse scleroderma, and they do suffer terribly with their disease.

~ Update 10/30/2015 ~

I have spent the last seven years in and out of the hospital. I was a patient of Dr. Frederick Wigley at Johns Hopkins, for 17 years. I learned a great deal, and was treated with the upmost respect and care.

Next came having an exceptional specialist in pulmonary and cardiology Dr. Stephen Mathai. I was able to get into a research project on pulmonary hypertension (PAH), trying out different medications. I was diagnosed with PAH three years ago. It was found my body also collected fluid, on the right side of my heart. I take Lasix 180 mg a day, to keep the fluid away.

One time about 15 months ago, the researchers asked me to participate in a heart catherization; the heart catherization was done through my neck, using a artery. They asked me to donate three pieces of my heart and I agreed to do this, as I have always been a strong advocate to help others. So, Dr. Ryan Tederick of JH, told me exactly what the procedure was and I felt comfortable doing this. I wasn't put to sleep, the wire went in and it was set to extract three pieces. He told me to look at the screen, so I was able to see him extract the pieces and I did feel it. The next day my heart was sore, but at least I was awake, and did something for research health science. I am proud of helping in this way!

The next chapter of my life came leaving Maryland. My husband was downsized and he couldn't find work. It was a very stressful time of my life, we lost our home and my husband's family suggested that we move in with them and get a fresh start. We moved to South Carolina to do this fresh start! John Hopkins helped me with a new team of doctors, at the Medical University of South Carolina (MUSC) and they even sent down important medical testings. MUSC is in Charleston, SC.

Now since we moved to paradise, I began to have aggressive breathing problems; I was diagnosed with COPD, then emphysema. This past March, I didn't pass my three minute walk test, my breathing and heart rate went down to 72%. I am on oxygen 24/7! I was very sad about this and it took awhile to get use to this air gadget, however, I have learned to wear this everywhere faithfully. Oh, they stopped my PFT after 1–1/2 minutes and since that test, I fail my test every time. But, there's a silver lining to things; if you don't wear this air gadget you could have a heart attack, or suffer a stroke! People walk up to me all the time and will inform me "I wish my husband would wear his". I tell them the story if you don't wear it, bad things can happen to you! The only thing I notice is that people get out of my way and they also open the door for me and small children pick their nose when they see me.

To Contact the Author

Email: [email protected]
Story edited 04-30-05
Story posted 05-10-05 SLE
Story updated 11-02-2015 JEF

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin

Acid Reflux
Cardiac (Heart) Involvement
Depression and Scleroderma
Digital Ulcers
Dr. Frederick Wigley
High Blood Pressure
Lung Involvement
Pulmonary Hypertension
Rheumatoid Arthritis
SCTC Scleroderma Experts

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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!

Go to Susie L: Raynaud's (and Scleroderma, too?)

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)