Living with a Chronic Illness

By: Tina Cameron

Not many people know that my two sons and I have a chronic illness that has no cure. It all began when my oldest was 9 years old. He was injured in his karate class (kicked accidentally in the head) by another kid. He was close to having a detached retina, had a black eye, busted blood vessels and spent 8 weeks wearing an eye patch. What we didn’t realize for several weeks was that this kick to his head turned out to be a blessing in disguise. He started having a “clicking” sound when he would move his head up and down or left and right. He thought it was a party trick. Little did we know that it was actually very serious. From his pediatrician’s office we were sent straight to Palmetto Health Richland for STAT CT Scans of his neck and spine. I began getting nervous as they kept coming to get him for more scans. At last, I heard my name being called and looked up and it was the radiologist with my son and tons of CT films in hand. She said Dr. Fred Piehl (pediatric orthopedic surgeon) is waiting for you now. I said, “it is 4:50, they are closing”. She replied, he is keeping the office open for you, you need to go now. I called my mom and my ex-husband and they both met us there.

As we all set in his office, I feared the worst. Corey was in the hallway and he spoke to us first and informed us what his condition was and that it could be life-threatening, and that Corey needed to be aware of it. He was diagnosed with Atlanto-Axial Instability of his Cervical 1 and 2 spine. He could turn, cough, sneeze or get in his head and it cause him to break his neck and with that he could break it and be fine, break it and become a quadriplegic instantly, or break it and it kill him instantly. We went home in shock. Everything changed, from how his bed was positioned, to never being able to play contact sports, diving in my parent’s pool, and his karate career was over. He was also home-bound from school for 9 months. He was 9 hours short of getting his black belt. He what is edsalso taught two classes of karate a week. We were sent to a neurosurgeon and neurologist as well geneticist. After our first visit to the neurologist, he said I think you all have this rare connective tissue disorder called Ehlers-Danlos Syndrome, Type 3. He told me to look it up and then sent us immediately for lab work on another floor in his office building. Shortly after his labs were drawn and we were waiting to leave, Corey grabbed his head and said, “I don’t feel well”. He proceeded to fall out of the chair, had a Grand-Mal Seizure and quit breathing and his heart stopped. I am a nurse and at that moment, I freaked out and was only the mommy. Thank God there were two other nurses there for lab work that revived him. We were on campus of the Children’s Hospital, so we were admitted from the emergency room for the weekend. He was also having incontinence of urine and numbness/tingling in all his extremities. Seizures also go with the Ehlers-Danlos Syndrome (EDS).

Once we had the official diagnosis from the geneticist, I became obsessed with finding everything I could about it. My friends who are physicians had not seen cases in over 20 years. It can affect your heart and affects all your connective tissue in your body, it affects your skin. The type we have, type 3 is now called hEDS (hypermobile Ehlers-Danlos Syndrome). There are now 13 different type of EDS. It is a group of inherited connective tissue disorders caused by abnormalities in the structure, production and/or processing of collagen. So, we have faulty collagen. Collagen supplements do not work for us, because it is our DNA that is screwed up. Basically, the boys and I have easy bruising, easy bleeding, incisions after surgery do not stay closed and we are extremely hypermobile and have soft, stretchy skin. We are prone to multiple dislocations daily, pain all over, bruises that come from something as simple as rolling over in bed. EDSers also have multiple medicine and food allergies and Corey and I do. This condition is hereditary, so unfortunately if my children have kids, there is a 50/50 chance their kids will have it as well. The most serious type is vEDS (vascular EDS)-this is where most people do not live past 35 and they usually die unexpectedly from an aortic dissection. My older son has the most serious case of hEDS out of the three of us and I have it moderately and my youngest just has it mildly.

When Corey was growing up, he began having dislocations from changing his shirt or raising his hand in class, to hip dislocating from walking in the school halls. He went through extensive physical therapy for 3 months and to this day must work out daily. We ended up not having the rod placed in his spine and gradually the numbness and incontinence went away. His instability in his C1 C2 spine has closed some which is wonderful. He learned how to put his shoulder or hip back in place on his own to avoid trips to the ER.

My hip has dislocated once, my shoulder 3-4 times from rolling over in bed when sleeping. I am in constant pain all over almost daily. My knees are bad and slip out at times, so I have braces to wear as needed or when I run. Bruises on my body, stay about 8 weeks where on normal people, just a few days. I even get bruises from fire ant bites.

Both boys have had complete knee reconstructions, at age 16 and age 26. We know we will be facing knee and hip replacements as we age. This condition affects our eyes, our teeth, and pretty much our whole body. Most people with hEDS also have Fibromyalgia, chronic fatigue, migraines, and more.

Knowing that you have a chronic illness with no cure is a hard pill to swallow. However, I try not to let it run my life. I deal with the pain and take Advil with me everywhere. There are days, I hurt so much all over I cannot get off the couch. Many physicians have not ever heard of EDS and many do not believe the patient and think they are hypochondriacs. Family members also doubt us (not mine), but people that I have met in online support groups. We started calling ourselves Zebras because in Med School, thewhy the zebra students are taught to that when you hear hooves, think horses, not Zebras. In medicine, the term Zebra is given to a rare disease or condition. That is how we became known as medical Zebras. Because of the complex nature of our disorder, we are followed by primary care, rheumatologist, geneticist, cardiologist, physical therapist, gastroenterologist, urologists, neurologists and many more specialists as things arise. Some of the friends I have made in my support group are already on disability at 22 and 32 years of age, so I feel blessed that as of right now, my joints have tightened up, I can deal with the pain and that thank God, we do not have the vascular type. I thank God everyday that my boys otherwise are healthy and that Corey’s doing much better and is in great physical shape.

eds scoreSo, the next time you see a contortionist on America’s Got Talent, more than likely, they have Hypermobile Ehlers-Danlos Syndrome. And, if you see someone parked in a handicap space get out and they can walk (just slowly) or is young and, in a wheelchair, —do not judge. Not all disabilities are visible. Because of so many people in the medical field not knowing or even understanding EDS, awareness needs to be widespread globally. Fortunately, May is EDS Awareness month and with numerous online support groups on social media, we are getting the awareness out on what this disorder is. What we need most is for our physicians to believe our symptoms and not dismiss us, or think we are hypochondriacs. There are genetic markers for vEDS, so I am not sure why medical professionals are not believing genetic testing.

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