Posted on 06/11/2005 9:39:16 PM PDT by Huntress
Christina Herron knows that scleroderma likely will claim her life by the time she turns 25 -- the age when most people are just diagnosed with the chronic disease.
The 19-year-old Carrollton High School graduate has had major stomach surgery and more than 200 skin ulcers in the eight years she has suffered from the connective tissue disorder that results in tightened skin.
"It's a hard adjustment," Herron said slowly. "Other teens your age don't have to deal with what you do."
Scleroderma -- which has struck 300,000 people in the United States -- isn't always fatal.
Herron is not one of the lucky ones. Four years ago, doctors told her the disease had spread internally, as it does in one-third of patients, and had begun to harden her lungs.
"It turns your heart to stone," she said, adjusting her thick glasses. "That's what's going to happen to me."
A quiet teenager with short, reddish-brown hair and a taut smile, Herron appears to sport a golden tan, but her darkened complexion is another side effect of the disease. She walks stiffly but says her pace has improved since she's started to walk almost a mile in the morning before she volunteers at Saint Mary's hospital in Saginaw.
Herron hopes her exercise routine will prevent her from getting winded, as she has in past years, at the 26th Scleroderma Foundation Annual Walk and Run on Sunday at Shain Park in Birmingham, a Detroit suburb.
Joining her on the one-mile walk are her parents, Karen and Glenn Hinds of Carrollton Township; siblings Justin Hinds, 16; Megan Herron, 13; Zachary Hinds, 7; and Kaitlin Hinds, 5; and her grandmother, Janet Bush of Pontiac.
Last year, Christina Herron raised $850 for the foundation; her goal this year is $1,000. More than 500 walkers participated in 2004, raising a record $85,000 for scleroderma education and research.
The highlight of last year's walk for Herron was getting to meet former Detroit Lions superstar Barry Sanders, whose sister died of scleroderma at 26.
"I got to talk to him for a few minutes," Herron recalled. "I was very nervous, but my mom said, 'You'll never get this chance again.' "
It's hard for Herron to remember her life before scleroderma -- when she was a sixth-grader dreaming of playing basketball, making the cheerleading squad and becoming a chef.
In hindsight, her mother says the signs were there from the time Herron was 5. She felt deathly cold even in the sweltering summer heat. Doctors never knew why.
Then Herron's hands began turning bluish-purple -- a scleroderma-related condition known as Raynaud's phenomenon -- and the then-11-year-old knew something was wrong.
At first doctors thought she had lupus, an autoimmune disease. Jennifer A. Viano, executive director of the Scleroderma Foundation's Michigan chapter, said many patients are misdiagnosed.
"There is a tremendous lack of awareness," Viano said. "The general public doesn't know a lot about scleroderma, and neither do many primary physicians."
After she was pricked and prodded in a seemingly unending battery of blood tests, Herron got the sobering diagnosis on the same day her aunt, Ruth Thompson of Sterling, died of scleroderma at 41. Research, however, doesn't indicate the disease is hereditary.
"I don't think I understood what was going on," Herron said. "I knew I was sick, but I didn't believe it."
Herron has spent much of the past eight years in physicians' offices. She has nine doctors, including a rheumatologist, gastrologist and cardiologist. Every evening, she swallows 10 pills for joint pain, acid reflux, blood circulation and depression.
Scleroderma already has wreaked havoc on her young body. When she was 15, surgeons had to stitch up the top of Herron's stomach after she kept vomiting after meals and lost 30 pounds in two months.
Her elbows, knees and fingers routinely split open and bleed from ulcers caused by her ever-tightening skin.
Herron says the past six months have been "pretty good," but it's the everyday things that wear on her.
She knows better than to take a bath: She's too weak to get out of tub by herself. She is too stiff to put on her own socks in the morning. And the teenager has never known the freedom of driving a car.
The debilitating disease also has left her unable to have much of a social life, and Herron tears up as she says she knows she likely will never get married or have children.
"I don't think anyone would want a wife or girlfriend who's sick like this," she said quietly.
Still, Herron said she's trying to make peace with her disease, and believes that "God has a plan for me." She looks to the words of her grandmother -- a breast cancer survivor -- to guide her.
"She always told me, 'God made you sick because you're the strongest,' " Herron said. v
Susan J. Demas is a staff writer for The Saginaw News. You may reach her at 776-9688.
Sad story and all the best to you.
Hmmmm....how sad.....have you heard of THE ROAD BACK.ORG?
I also wonder, has this young woman tried antibiotics?
After reading this story I think, " And I think I have problems?!" What a courageous young girl. I hope she has good friends her age.
I am familiar with The Road Back and Thomas McPherson Brown. I am pretty skeptical of his approach to scleroderma, though. I know there is anecdotal evidence to support his theories, but I don't think there's much empirical evidence that shows that antibiotic treatment really works. Also my symptoms are under good control with minimal medication, and I just don't want to rock the boat. If my condition took a nose dive, though, I'd try just about any treatment if I thought it had a chance of working.
Thank you.
Kudo's to you; you sound well informed......I got some sort of inflammation a year ago (Lyme?), and cheap antibiotics (mino) and aspirin have helped greatly ....I refuse to spend $10,000 a year on what the Rheumatologist told me I would need.....he was wrong. I found the info through the Road Back.org.
Good luck to you.
Extremely sad.
Prayers being said now for both the young lady and you.
I'm glad to hear that the antibiotics are working for you. As much as rheumatologists know about scleroderma and other autoimmune diseases, I think that autoimmunity is still a real enigma to medical science. I've heard a number of docters say that it doesn't matter so what specific autoimmune disease a patient has, because the treatment is aimed at the symptoms and doesn't differ based on the diagnosis. I think there is a real benefit to be had from alternative therapies, even though a lot of medical doctors think it's quackery. I went to an accupuncturist for quite a while, and I think it helped. I don't know if the needles themselves did it, or if the effect was purely psychological, but I am not going to argue with success.
LOL...I agree....I forgot to mention...I started taking Vit B, also....and I kinda think that's helping too. Whatever works!!!
God bless you and this brave young woman. I had no idea.
Thank you for posting this article. Both you and the young lady are in my prayers.
AIDS is political, with large concentrations in the Gay community and Africa, two sacred cows of the Left.
my dtr has generalized dystonia..never heard of it until she came down with it....
I hope some day that our medical research evens out a bit, investigating more and more these uncommon yet devastating disorders/diseases....
stay strong .....
You know, one of the most important things you need when dealing with something like this is a doctor who is not a pessimist. Of course, I want my doctor to tell me if he thinks that some mainstream or alternative treatment is dangerous or a total waste, but I also want someone who realizes that western medicine doesn't have all the answers, and is open to new ideas.
I remember working with a teen, like 14 or 15 years old, who was just diagnosed with scleroderma, back around 1990.
I can only imagine the hell she's dealing with now.
Good story.
Wow. Prayers for your complete recovery.
I'm so sorry about your Mother. The Scleroderma Foundation is a pretty good organization. It funds research and tries to raise awareness of the disease. Its members also hold a meeting in Washington DC once a year to go and lobby members of Congress for more funding. I'm a little leery of this activity, as I'm not sure the lobbying is strictly limited to getting increased research funding.
I had to look up generalized dystonia. Prayers for you and your daughter.
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