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The good days and the bad days

11 year old Esther had a "long and rough road" to diagnosis and is now learning to take the good days with the bad days of living with hyper-mobility Ehlers Danlos syndrome. But she isn't letting it get in the way of achieving her dreams!

Hi, my name is Esther, I am 11 years old and I have Elhers Danlos syndrome.

There are currently 14 known types of Ehlers Danlos syndrome, or EDS, and I am diagnosed with hyper-mobility Ehlers Danlos syndrome, or HEDS. EDS is a connective tissue disorder, it affects a lot of things but mainly your joints, tissues and ligaments.

I have been diagnosed for about 10 months.

The road to diagnosis was long and rough. Along the road to diagnosis I was misdiagnosed with a lot of different things from chronic pain, to hearing loss, to anxiety, but we got there in the end and I am very grateful for that.

One of the side effects of my EDS is I had cranio-cervical instability (CCI), atlanto-axial instability (AAI), and a life-threatening basilar invagination. Basically my brain stem was being compressed in the place that controls breathing and heart rate so in my sleep it was possible I could stop breathing because the signal to tell my body to breathe was being blocked.

Thankfully I had surgery a month ago and am now in recovery.

My Mom also has EDS and had surgery for Chiari, CCI, and AAI the day after me. It was hard to see her in pain and struggling, as well as dealing with the pain I was in, but I'm glad we are both doing better.

Life with EDS has to be modified—thankfully I'm home schooled so it makes things easier. One modification is wearing braces, like ankle braces, wrist braces, neck braces, and my Mom uses finger splints. We don't wear them all the time, mostly when a joint has subluxed or dislocated or when our joints feel like they could go out. They keep everything in place and keep us from doing anything that will make it worse.

Because of the surgery I also use a wheelchair for situations where there is going to be a lot of movement, I can walk but people with EDS get tired quite easily so it is very helpful.

Like all people with rare diseases, I have to get used to the fact that I'm going to have good days and bad days.

One important thing though is to not let that stop you from achieving your goals!

I have done ballet most of my life and when I am fully recovered from surgery in about 6 to 12 months, I intend to keep going. Of course it will be different and I will have to manage things like not working my joints too much the rest of the week, but that is a very small price to pay for being able to do what I love.

I'm really happy there are things like RARE Youth Revolution, it's nice to know that you're not the only person dealing with hard things and there are people you can relate to.

💚 Esther

Written by Esther Hula

If you would like to submit your voice to the RARE Youth Revolution, please email our youth editor, Daisy Marriott:


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