Ehlers-Danlos Syndrome

Cheyenne Adele Rose is a dancer, however her passion in life has been affected due to the medical condition called Ehlers-Danlos Syndrome.
This young and talented lady can still dance but unlike others she is more at risk of an injury due to her extremely loose joints.
But she is a fighter and through her interview with me we are hoping to raise awareness of this condition which is very rarely heard of.

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Cheyenne Adele Rose featured in the press via;

http://www.independent.co.uk/life-style/health-and-families/health-news/internet-diagnoses-dancer-with-incurable-condition-after-doctors-left-mystified-a7027166.html

http://www.attn.com/stories/8320/imgur-diagnosed-woman-doctors-got-it-wrong

http://www.thesun.co.uk/sol/homepage/features/7146794/Dancer-complained-of-her-recurring-injuries-so-the-people-of-Imgur-diagnosed-her-and-got-it-spot-on.html
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The Interview:

What is your name and age?
My name is Cheyenne Adele Rose, and I am 21 years old

When were you diagnosed with Ehlers-Danlos Syndrome?
I was officially diagnosed on Wednesday May 11th, but doctors had been "hinting" at the idea that I have this condition for months.

How was the diagnosis made?
I went into a pediatric geneticist and he did physical tests, I.E. bending my hands, seeing if my legs and arms were hyper extended, if I could put my hands flat on the ground when touching my toes, etc.

What symptoms did/do you have?
I have extremely loose joints.
Specifically my hips and shoulders dislocate very frequently.
I have unexplained chronic pain, headaches, and a mild Chiari Malformation (another medical issue involving the brain.)

What treatment did you receive?
Unfortunately for this condition, there is no treatment.
The only thing to treat are the symptoms. I have already had two hip surgeries, and I am going into surgery this summer to have my shoulder tightened.

Are you prescribed medication?
Not off the bat.
You can be if you are in too much pain, but there isn't a medication for this condition.

Is the condition hereditary?
It is, but I am not sure where it came from in my family.

Is there a cure?
No there is not.

What type of dancer are you?
I have done all types of dance, but I am specifically focusing on Jazz at the moment!

How has the condition affected your ability to dance?
EDS is a double edged sword when it comes to being a dancer.
It makes you extremely flexible, but at the same time extremely susceptible to injuries that a normal person would not experience.

What advice would you give to others in similar situations?
Don't give up.
It sucks to be told that you have an incurable genetic condition, but there are ways to live a perfectly normal life with this one, you just have to be very cautious of your body.

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Help & Support

http://www.nhs.uk/conditions/ehlers-danlos-syndrome/Pages/Introduction.aspx

http://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/

http://www.ehlers-danlos.org/what-is-eds/types-of-eds/

https://www.rareconnect.org/en/community/ehlers-danlos-syndrome