I am twenty-nine years old. I have been diagnosed with CREST. It took along time for the doctors in South Africa to find out what was wrong with me.
I was twenty-three when the first symptom presented itself. I always had a tendency to feel cold, like my blood circulation was just bad. I was working late one night and my colleagues noticed that my hands went black. They asked if I worked with ink. Of course I did not and mentioned that I am very cold (and it was the middle of summer in Africa!).
My fiance rushed me to my general practitioner that evening and he diagnosed me with Raynaud's. He referred me to a specialist surgeon, who tested me for lupus. He then referred me to a rheumatolgist. She confirmed that I had systemic lupus erythematosus (SLE). They basically referred me to the Internet if I needed to find out more. I was shocked when I read about all the symptoms. The doctors put me on cortizone and Iloprost for six days in the intensive care unit (ICU). It did not work!
About one and a half years after being diagnosed with SLE, I started to experience additional symptoms of Difficulty Swallowing and difficulty using my hands and joints. I went back to the rheumatologist. She ordered a barium swallow and x-rays. She confirmed a day later that I had CREST. Again she referred me to the Internet and said that she will prescribe pain killers if I need them.
I was terribly upset as it seemed that the doctors in South Africa have limited knowledge about the treatment of the disease and there are no support groups that I could find. I emailed a scleroderma organization in America for help. They sent me information about a doctor in South Africa, whose office is just a block away from where I work.
He examined me, and ordered blood work, x-rays, lung functions and a gastroscopy. He immediately confirmed CREST, but also SLE as well as Sjogren's. I am now diagnosed with mixed connective tissue disease (MCTD), with scleroderma being the dominant one.
He changed my diet anda gave me vitamin supplements. He convinced me to try some natural remedies to relieve the symptoms. After about two years of eating right and using homeopathic treatments, my skin condition has improved tremendously, my mobility has improved, and I rarely get joint and muscle pain. The only problem that we cannot seem to manage is the reflux, but I try to manage it with my diet. The reflux is particularly bad due to the hiatal hernia I also have.
I follow an exercise program twice a week for an hour. I stretch a lot and I do Kata boxing. I practice pilates and yoga. I stay clear of proteins such as meat and eggs. I also avoid take-aways and fast foods. I eat a lot of fresh raw vegetables, fruit and fibre.
I sleep rather poorly, but the exercising seems to help for the insomnia. I also take care of my skin by exfoliating twice a week, and applying a moisturizing mask. I use a lot of moisturizer. I brush my teeth three times a day and I visit the dentist every six months. I also take fluoride supplements.
I believe that if we try to feel positive about our life and the cards we are dealt, then we can manage our disease most effectively. It seems to me that the more negative we are, are the sicker we get!
I am now thirty-one years old and living in Johannesburg, South Africa. I was diagnosed in 1997 with mixed connective tissue disease (MCTD), with my dominant diseases being scleroderma and Sjogren's.
It has been going well in general. I got married to my high school sweetheart and we have a beautiful two-year-old boy. His birth had complications as he was born eleven weeks prematurely. He is fine, though. I think I just could not stretch any more.
I am on malaria medication, reflux medication, and blood clot medication. I am also on something to alleviate my joint pain and inflammation, but it gives me headaches, so now I drink it at night so I do not feel the headaches. Although I am not a good sleeper. I also try to follow a healthy diet. We do not really eat red meat (my husband has high cholesterol) and we eat loads of fruits and vegetables. I have also recently started drinking eight glasses of water and plenty of tea.
I had a bilateral sympathectomy to try to eliminate the Raynaud's. It has worked for one hand but not for the other. Boy, was that a sore operation. I will not do it again.
I recently have been experiencing changes in my symptoms. I am getting joint inflammation much more often. My nose is smaller and its skin keeps on breaking open. My mouth is also much smaller, and I am having difficulty closing it. My gums are receding and my teeth are very sensitive. My skin has been getting more red blotches and no makeup covers it up. My eyes are very dry and yellow (this might be because of the Sjogren's). I am getting stiffer. I cannot get out of a sitting position if I am on the floor. My one finger has lost all feeling. The heartburn is also getting worse, but I just increase my dose of medication for it.
I must say if I exercise (stretching and walking) I do feel a lot better. I am due to go and see the doctor in the next two weeks and will discuss the above. The disease seems to have a remission phase and a flare-up phase every couple of years.
I actually cope very well with it, the symptoms just becomes a bit of a nuisance. I will not give up though.
Email: [email protected]
Story posted 03-24-04 SLE
Update edited 11-22-05 JTD
Update posted 11-23-05 SLE
Story Artist: Judy Tarro
Story Editor: Judith Devlin
Overlap Syndrome: MCTD
Pregnancy and Scleroderma
Judy Tarro, ISN Artist, created the digital photo to illustrate the story on this page.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: