My name is Jill and I am 29 years old. I am a former competitive gymnast and I have Ehlers Danlos Syndrome, Chiari Malformation- Type 1 (8.5mm herniation), craniocervical instability (C1C2), Neurocardiogenic Syncope and POTS (forms of Dysautonomia and secondary conditions to EDS), bilateral hip dysplasia (corrected in a procedure called Periacetabular Osteotomy–PAO), Gastroparesis and delayed intestinal motility, Hashimoto’s, Graves’, Autoimmune Neutropenia, and Complex Regional Pain Syndrome (CRPS).
My Story
In 2009, after nearly 2 years away from the sport of gymnastics (not to mention several orthopedic surgeries), I decided to make a “comeback.” I was determined to compete at the collegiate level as it had always been one of my goals. I simply felt I had unfinished business. I spent my life in the gym training to become an elite level gymnast, dreaming of competing in the 2008 Olympics.
Everything seemed to be going well and I was back training at my original gym. About two months into my training, I felt a pop in my left hip. Being a gymnast I was no stranger to pain and would usually have continued to push through. However, this time I knew something was different. With each step I took, my hip would pop, and I experienced sharp, agonizing pain in my groin.
I had finally come to the realization that my body had reached its limit. It could not handle being a gymnast anymore. Needless to say I was an emotional wreck. Gymnastics had been my life ever since I was 5 years old. It defined me, and I couldn’t imagine not being able to compete or train again.
Later, I was diagnosed with bilateral hip dysplasia and Ehlers Danlos Syndrome (EDS). Being diagnosed with hip dysplasia and EDS was a very emotional time for me. Hip dysplasia meant I was more susceptible to early onset osteoarthritis and I would need invasive surgeries to correct the position of my acetabulum (hip socket).
Ehlers Danlos Syndrome is a rare, connective tissue disorder with no cure. Because connective tissue comprises about 80% of the body it is a whole body disorder and can manifest itself in many different ways. It is life changing. With EDS comes a host of other related conditions. I struggle daily with autonomic dysfunction (POTS), headaches, GI issues, chronic widespread pain, and bizarre allergic reactions. Simple activities are more difficult and I face challenges everyday.
I have had to learn to adapt and accept that my health is constantly changing. While I can no longer control my body, there is something I can control; I can control my attitude, my outlook, and how I choose to live my life. I can live in self-pity behind a diagnosis and let it tear me apart, or I can accept it and turn it into a positive experience–not only for myself but for others as well.
I try to live my life with optimism and a sparkling personality. I cannot always decide what happens to me, but I can decide how I react. I like to find the positive to every situation, even if that means bizarre humor that only I find funny.
Just because my life with EDS is not glamorous, does not mean that I can’t sparkle! I have goals and dreams, likes and dislikes, interests, hobbies, and passions. My #1 passion (or obsession as some may say) are the Boston Bruins! They quite literally keep me going. Though I am not practicing, I am a Registered Nurse. In 2016, I opened Jillie Beanz Gifts to sell embroidered kitchen towels. I am also in the process of writing a book. Though my life is not the one I had envisioned, I still live my life despite my illness.
The easy road is the road of negativity. A road of self-doubt, self-pity, and self-destruction. But I chose the hard road. The road of positive thinking and determination of finding a silver lining to every situation. It may not always be easy but I try to JUST SPARKLE!
Don’t ever let anyone dull your sparkle!
Surgeries
Before EDS diagnosis
- Tonsillectomy- 8/06
- (L) Shoulder Arthroscopy (labral tear repair)- 7/07
- (L) Ankle Arthroscopy (scar tissue removal)- 8/07
- Appendectomy- 9/07
- (R) Wrist Ulnar Shortening Osteotomy- 12/08
- (L) Hip Arthroscopy (labral tear repair and FAI)- 3/10 (L) Hip PAO- 6/10
After EDS diagnosis
- (L) Knee MPFL Reconstruction with allograft- 11/10
- (L) Hip hardware removal- 11/10
- (R) Hip PAO- 3/11
- (L) Knee elongation of graft- 3/11
- (L) Shoulder Open Reconstruction- 5/11
- (R) Ankle Reconstruction w/ allograft (Brostrom w/modified Chrisman Snook)- 12/11
- (R) Knee Tibial Tubercle Osteotomy and MPFL Reconstruction with allograft- 12/11
- (R) Hip hardware removal- 12/11
- (R) Shoulder Open Reconstruction- 7/12
- (R) Knee hernia repair and hardware removal- 7/12
- (L) Hip Open IT band release/elongation- 12/12
- (R) Hip Open IT band release/elongation- 7/13
- (R) Ankle peroneal tendon synovectomy and scar tissue removal- 7/13
- (R) Knee suture removal over MPFL graft, elongation- 7/13
- (L) Knee suture removal over MPFL graft- 7/13
- (R) Hip Arthroscopy (labral tear repair, osteoplasty-FAI)- 3/14
- (R) Hip Open IT band re-release- 3/14
- (R) Knee Arthroscopy (cartilage and scar tissue debridement)- 3/14
- (R) Ankle peroneal tendon synovectomy- 3/14
- Posterior Fossa Decompression for Chiari (8.5mm herniation)- 12/14
- (R) Hip Arthroscopy (labral repair)- 8/15
- (R) Derotational Tibial Osteotomy- 9/15
- Port-a-cath placement- 8/16
- (L) Shoulder Open Reconstruction with allograft- 9/16
- (R) Hip Open Reconstruction with cadaver graft & rectus femoris re-attachment- 12/17
- GJ tube placement – 9/18
- (L) Knee Tibial Tubercle Osteotomy & MPFL/LPFL Reconstruction w/ allograft- 12/18
- (R) Shoulder Open Reconstruction with allograft- 8/19
- (R) Shoulder acromioplasty and bursectomy- 11/20
- (R) Hip Exploration with Fluroscopy – 2/21
- (R) Hip PAO – 7/21