TOWN OF TONAWANDA — When most people think of being a young teenager, they imagine things like shopping at the mall, playing sports with friends and going out for school outings.
But for 14-year-old Nicole Schneggenburger, those things can be a bit taxing. Schneggenburger has a rare joint disorder called Ehlers Danlos Syndrome which causes every joint in her body to dislocate.
One of the best treatments for this illness is warm water therapy, but Schneggenburger’s family couldn’t afford it. A gift from Thermospas has changed that, even allowing for some socializing in a comfortable, relief-filled environment.
Schneggenburger talked about her experiences before and after the gift for this week’s Q & A.
•••
QUESTION: How long have you been dealing with EDS symptoms?
ANSWER: The symptoms started when I was 6, but I just got diagnosed a year and a half ago.
•••
Q: What kinds of problems does this condition present?
A: The EDS gives me hypermobile joints, which means they pop out a lot.
•••
Q: What is a typical day like for you?
A: In the morning I have to crack everything back into place that came out while I was asleep. But activity like school or sports makes it worse and causes more pain.
•••
Q: How did you get relief before you got your hot tub?
A: We can only treat the symptoms because there’s no cure for EDS. So I take a lot of Tylenol and anti-inflamatories. Since I was diagnosed they’ve prescribed me prescription strength things now, but it’s pretty much the same.
•••
Q: How long have you had the hot tub?
A: It was delivered on April 2.
•••
Q: How often do you use it?
A: I go in at least once a day when I’m going to school and more on weekends. I try to be in it as much as I can.
•••
Q: How has it helped you?
A: Because my joints are hypermobile, my muscles are overworked and they spasm. The jets help my muscles feel better and the heat does as well.
•••
Q: How long does that relief last?
A: After being in the heat it usually lasts for a couple of hours and I’ll feel good. Then as my muscles cool off the pain starts to return gradually.
•••
Q: So has the tub been fun too?
A: It’s been a lot of fun. I don’t just have to be there all alone like I would at physical therapy. I can invite my friends over so they can be in with me and we can talk, and my family comes in too.
Contact reporter Daniel Pyeat 693-1000, ext. 158.
Photos
080427 q&a /ton
DAN CAPPELLAZZO/STAFF PHOTOGRAPHER
Tonawanda - 14 year old Nicole Schneggenburger, of Tonawanda, sits next tot he hot tub her parents bought her to help her with her rare condition Ehlers Danols Syndrome which causes her joints to dislocate frequently.
DAN CAPPELLAZZO/STAFF PHOTOGRAPH/(Click for larger image)
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