My first interview in this series is with Jenna. Jenna is 14 years old, and she is living with Ehlers-Danlos syndrome type 3. EDS type 3 effects the joints, causing severe joint pain and dislocations. Jenna was a dancer until this past January, when EDS forced her to stop dancing. This is her story...
"I have always been double jointed. Starting in 5th grade, I had constant pain in my joints, and sometimes felt like joints were going out of place, then going back in. I ignored these symptoms, thinking they were the result of dancing 6 days a week. The pain in my knees worsened, so I told my mom. I was mis-diagnosed with tendonitis. The next year, I started to become extremely injury prone. It seemed like I always had one injury after another. If you were to look at our photo albums, you would see that I always had some sort of brace on some part of my body. Because of all my injuries, I missed a lot of dance.
"On July 5, 2013, I dislocated my left knee while doing a lunge in class. It was out for two hours before the doctor at the hospital finally put it back in. Recovery was tough. I used crutches and an immobilizing brace for a month or so. Then, my friend accidentally sat on my knee and I had to start the recovery process all over again.
"Once I recovered from that, I started to dance again. But I started to get severe vertigo daily. After Christmas, I was so sick, I went from being 111 pounds to 104 pounds (my height is 5'8''). In January of this year, I was diagnosed with Ehlers-Danlos Syndrome.
"In March, I was hospitalized for a week. My mom told the doctors that she knew I wasn't dying, but it felt like it. I would take a bite or two of food, then get too nauseous to eat. I drank Ensure nutrition drinks to help gain the weight back. During my hospital stay, I was diagnosed with dysautonomia. I also met my great friend, Brooklyn, who has the same conditions as me.
"I am now taking chromolyn sodium for dysautonomia & low dose naltrexone for EDS. The chromolyn sodium is working very well for my dysautonomia (although I still get sick). The low dose naltrexone isn't quite working for me yet, but people with EDS have had good results with it. It's supposed to bring pain levels down to a 3-5. I'm also trying The Maker's Diet by Jordan Rubin. He basically cured himself from Crohn's disease and 17 other illnesses by eating healthy and praying. Although he did not have Ehlers-Danlos, I'm trying the diet.
"My mom and I are expecting me to have a better quality of life than I have now. We know that I'll still have dislocations etc, but that's okay. You have to accept what you can't change. I have a wonderful mom, and I know she'll always take care of me. I also want to point out that I have amazing friends who support me every step of the way. I don't know what I'd do without them. I am also writing a book called 'Only Time,' about a girl who has my conditions, and I am basing her experiences off mine."
Q & A with Jenna!
Q: When were you diagnosed with Ehlers-Danlos Syndrome?
A: I was diagnosed with Ehlers-Danlos syndrome type 3 in January.
Q: When did you stop dancing?3. I stopped dancing around late January or early February.
Q: What is it like to live with EDS?
A: With EDS, I always have joint pain & frequent dislocations. I was also diagnosed with dysautonomia (a malfunction of the Autonomic Nervous System) in March (during a hospital stay). The dysautonomia makes me feel sick a lot. I'll feel as if I'm getting the flu, but I'm not contagious at all. It's very hard with EDS and dysautonomia, because I never know how much I can do everyday. If I do too much, I pay for it by having more extreme pain, or feeling sick. I look normal even when I feel terrible, and it really is hard to hear someone say, "Oh you look so good!" when you feel so bad.
Q: If you could tell someone only 5 facts about EDS, what would you tell them?A: If someone were to ask me to give them five facts about EDS, I would say:
- People with EDS have high joint pain & frequent dislocations.
- We have a much higher pain tolerance than most people. Our 6 would be a 8, 9, or 10 to others without an illness.
- Zebras are the EDS mascot because when doctors hear hoof beats, they think horses and not zebras.
- It is very easy for us to dislocate without trauma. Ex: Picking up a milk carton, getting off the floor, opening the refrigerator, etc.
- We are not lazy, not crazy, just in pain.
Although Jenna is currently bedridden, she hasn't given up on dance. Her current goal is to be able to do barre, and someday teach dance.
This is the first in a series of interviews I will be doing to help dancers share their inspirational stories. Everyone has a story, and it is important to share them! If you or someone you know has an inspirational story to share, please email me: liveonpointe@gmail.com
Love,
Clarissa May
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Youtube: Live On Pointe & Clarissa May
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Twitter: @clarissamay09
