Lack of support after her diagnosis of scleroderma led to Tina Dowden reaching out to others in her area and setting up a support group
I’m 37 years old and live in Louisiana in the US where I work as a real estate agent and manage property for weekend/vacation rentals. I am married and I have a son who is 14 years old and a daughter who is 11 years old.
Five years ago I started having scleroderma symptoms, such as painful flare-ups in the wrists and then Raynaud’s set in. It turns out that most people with systemic sclerosis develop an unusual sensitivity to the cold when fingers or toes turn white and then blue in the cold. I also had red spots on my chest, discoloration on my face, arms and chest and I noticed a shiny mark on my chest.
But it wasn’t until I started having heart palpitations and passed out that I knew something was really wrong. My husband and mother in law took me to hospital where they did every test known. But nothing showed up other than that my cardio enzymes were elevated. So they admitted me for three days. Soon afterwards I saw a rheumatologist and was eventually diagnosed with diffuse systemic scleroderma. Overall it took me a few years to get a diagnosis of scleroderma, and that is considered fast… some go several years before a diagnosis is made.
When I was diagnosed the first thing I did was turn to the internet (like most people do, I’m sure) and it terrified me. I wanted to talk to someone that had gone through the same things and had the same feelings as I was having, but the closest support group was in Houston, Texas and Baton Rouge, Louisiana, which is too far for me to drive.
Taking action
This year I started a support group called Scleroderma Hope and had the first meeting in January; the next is taking place later this April. We offer support… not only on meeting days, but a phone call, a shoulder and hope! I would even meet with someone over dinner or lunch to talk. Sometimes it helps to express your feelings to another who can truly relate. I’ve had numerous calls, emails and Facebook messages asking about the support group or people who just want to tell me that they or someone they know or knew has scleroderma.
My hope is that that others can reach out and not be as terrified as I was when I first heard that word – scleroderma – that took me a few days to even pronounce correctly.
In getting the word out about the group I’m realising there are many more in my area with scleroderma. We are all alike but different in how the disease affects us. I’m brand new to starting the group… I know that I still have plenty to learn, but we all have to start somewhere. Everyone is a beginner sometime in their life, right?
Scleroderma hasn’t stopped me, but it has slowed me down and keeps me from several activities that I use to enjoy. I’m limited in terms of work – as can be short of breath and tire easily when going out to show property, climbing stairs or walking up an incline. When I’m in the office, at times I have trouble concentrating. I pace myself the best I can.
Scleroderma is a part of my life and my family’s lives as well. But I’m not one to just be ok with it. I will spread the word about this disease and hopefully help some of those who are affected.
• For more information about Tina’s support group, Scleroderma Hope, email [email protected]
• The Scleroderma Society (UK support) visit www.sclerodermauk.org or tel 020 7000 1925
• The Scleroderma Foundation (US support) visit www.scleroderma.org or tel (978) 463-5843
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