The Full Story
I started my journey with EDS when I was in the military. I got hurt starting in boot camp, 2005. One day we were at the grenade training range, and we had done a huge run that morning. So my muscles were kinda feeling like jelly and my leg just gave out on me and I cracked my knee off the pavement. My knee swelled up like a balloon and my knee was swollen that I could barely get my BDU pants on. But there was no way I was going to go to tell my Drill Sergeants that I was injured or go to the TMC (Troop Medical Center). This is because the Cadre and Drills made it seem like if you missed a day of training you would be recycled through Basic Training again, and There was no way in hell I was gonna let that happen. And this was for a couple of reasons.
First and foremost, I did not want to fail to complete Basic Training on time, the First time. And Also I went to Ft Benning, GA for Basic Training, allegedly the hardest boot camp of the army depending on who you ask, and it was the hardest thing I had ever done up to that point and I wasn't gonna be stuck in what I called "hell on earth" any longer than I had to be. But I made it through the day without falling behind, took every once of mettle I had but I did it. The next day, my knee was much less swollen.so I dismissed the entire thing and continued with Basic Training. We also did pt on sand, which is great for building muscle, also great for getting shin splints. But this is a common thing in the Army so again, I didn't put much thought on it, I just had the state of mind of "rub some dirt in it" and move on. I finished training and continued my Army career. I want to make perfectly clear, that I do not think that the Army's thoughts on toughening up are bad or detrimental. They are necessary to create good, strong fighting men and women and it is a necessary thing to weed out people who are just not made for the profession. There is nothing wrong with not being a good fit for the Armed Forces. It is a tough life and it isn't for everyone.
A year, year and a half later, when I was stationed at Fort Hood, I started to have pain in my ankles. But I didn't seek medical help. I pushed through it. Having the mentality of "pain is weakness leaving the body", or "sick call is for people who are sick". Well, that came back to haunt me in the end. I hurt myself pretty badly on a run, shortly after being on crutches for a few months for stress fractures in my legs. I was cleared by medical recently for full duty again, we were doing PT in the morning like we normally do. The roads were rough as they were in the process of resurfacing the blacktop. I tripped on a man-hole cover or some other thing in the road while in running formation, and I felt and heard a snap and crack in both of my ankles. And it hurt so much and I didn't want to be seen as weak. But I wasn't raised to be a quitter, so I kept running. It was only when my Sergeant saw tears running down my face and saw me limping as I was running that told to stop running. And if I didn't, I was going to get an Article 15, which is a type of punishment under the UCMJ.
I had never been so grateful to someone at that current moment and I went to the Aid Station. The Aid Station PA sent me to Podiatry later that day who did X-rays and saw I had torn both Achilles Tendons, the Ligaments and other tendons in my ankle and fractured both ankles and stress fractured my Fibulas. The treatment for this required multiple reconstructive surgeries to correct the problem. I had a total of five surgeries while I was in the army. Two on each of my ankles alone. My ankles never were the same after that, they never stopped hurting, they were always loose and it was common for them to dislocated and subluxate despite the surgical intervention.
I was in a walking boot for almost two years and got very good at using crutches. I started with traditional crutches like they give almost all patients, but after about 2 months, they started to cause other problems. Our Barracks were in the same building as our unit's operations building. and the living quarters were on the second and third floors. I lived on the third floor as it was designated for my company. My unit moved me to barracks on the second floor to make it a little easier on me. But the crutches were bruising my ribs and causing my shoulders to start to dislocate and subluxate. So my Podiatrist gave me a set of Canadian crutches, which made things a lot easier. It made going up and down stairs so much easier. For the entire time I was on crutches, I went through three pairs of Canadian Crutches, as they wore out because of how hard I used them. When my surgical wounds didn't heal as fast as they should have, it created a cause for concern. At the same time that was going on with my ankles, other joints in my body were starting to give me problems as well. The problems in my wrists, knees, shoulders, and hips were the most prevalent.
This gave cause for concern to my Podiatrist, who by this time was a different doctor, but just as good if not better than my original doctor due to my first doctor being Assigned to a new base. He said I had a joint laxity disorder, but as to which one, he couldn't be sure. So he sent me to an Army Rheumatologist. It took a team of several doctors and months of testing, injuries, and braces to figure out I had a joint laxity problem. It was only after more intensive testing and research did we come to the diagnosis of Ehlers-Danlos Syndrome. I was medically retired from the Army in May of 2010 and I moved back to PA. I struggled for a few years trying to get the care and equipment I needed to improve my quality of life. I also really didn't know what I wanted out of life.
During this time I lived with my family and made regular visits to the doctor's office and hospitals. It wasn't until I met my wife that things really started to get better. She showed me that I didn't have to settle for the treatment I was receiving and we started going to a civilian hospital group called WellSpan in York P.A. Within a few weeks of going to the WellSpan Healthcare System, I had 5 specialists, was seeing a Pain Management physician, a Neuro, Ortho, Physical Therapist, Neuro Surgeon, and was in the process of getting a Spinal Stimulation Implant in my back to help with the pain associated with my conditions. Two months after that I was implanted with the permanent implant and it has helped immensely deal with the chronic pain. That was almost three years ago. I have had a handful of other surgeries, mostly removing benign masses that have formed under my skin that cause immense pain. This is an ongoing struggle. However, I have not had an issue for almost two years in that regard.
I have other medical problems, seizure disorder, Solar Urticaria ( Allergic to the Sun), Chronic Pain Syndrome and other things. My seizures are now well managed with medication and the knowledge of what triggers my seizures. I have a brighter look on life, I got married and now have a child on the way. I manage my medical conditions with medication, braces (I have A LOT of those), assistive devices and moral support from friends and family.
It took me a long time to realize that getting hurt while I was in the Army was probably the best way that things could have happened. Healthcare is expensive, and EDS is a rare disease. It requires specialized treatments, surgeries, hardware, medication, and many different physicians to treat it effectively. Since this happened while I was in the Army, and my initial entrance physical did not show any symptoms of having EDS, the VA, and the Army have me and my family covered with medical insurance for the rest of our lives. Because of the severity of my injuries and the circumstances of everything, I was medically retired, which gives me the same benefits as someone who has done 20 years. There were other injuries but they did not contribute to my current state nearly as much as what I have previously written. I do not take this lightly and I am grateful every day for what God has given me.
As of February 2019, I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome, and TMJ. I suffer from chronic migraines almost every day, exhaustion from doing the simplest things, and sometimes I will just be sitting and it will feel like the life is being sucked out of me. For years I would tell my doctors about this and they wouldn't believe me. They would tell me it was all in my head. But then I met my Primary Care Doctor and then later, EDS Doctor. He did a battery of tests and when he diagnosed with POTS and MCAS, I felt validated. Knowing that it wasn't in my head and that someone who had a medical degree and was an expert in the field knew it too made me feel so much better. And it is treatable. So I am on a path to improving my quality of life and my wife plays a big part in that. And I am grateful to her for it.
I created this website to spread awareness and to share my knowledge and story with others who suffer from "invisible" diseases and conditions. I am in the process of pursuing an education in medicine so that I can help others the way I was helped and to be on the front lines of medical breakthroughs. I hope that this site can be an avenue for fellow EDS patients and those seeking more knowledge and information about this chronic condition and others related to it. I am passionate about this and am always up for learning new information, even on my most painful day. This is a non-profit, completely free site. I am trying to create a database of fellow Zebras so that we can all come together and form a stronger more supportive community. Please sign up and share this website with your friends, family, and colleagues and stay tuned for new content constantly being uploaded.