I am the caregiver of a disabled Veteran , a mother to 3, and I am sick. I am going to tell you a little bit about what I face everyday that I don’t get to tell you during a thank you call. Generally, I call to tell you thank you for what you have done for my family through your contributions. Only, the things you don’t hear about are the things military and Veterans’ families face every day that are not talked about.
Many Veterans have faced some kind of trauma whether it be a physical or mental one, it is there all over the news, posted in blogs like this one or even seen on car stickers driving down the road asking to support the troops. What isn’t discussed possibly due to lack of knowledge, is what my family goes through. "When the caregiver needs care.” This greatly affects my life and I am trying to educate others. It is daily struggle to keep being “Me” while trying my best to not let the ‘Demon’ in my body stop me from being the Wife, Caregiver, and Mom I want to be. Let me explain…...
It is known the world's population clock predicts there will be approximately 7.7 Billion people in existence by the end of 2019. Ehlers Danlos Syndrome effects 1 out of every 5,000 to 20,000 people, based on those statistics and the population count, there are somewhere between 385,000 to 1,540,000 people affected with EDS.
The Ehlers-Danlos Society partnered with the Greater Baltimore Medical Center (GBMC) to establish the EDS Center for Research & Clinical Care at GBMC’s Harvey Institute for Human Genetics. The EDS research and treatment facility opened in Baltimore on August 16, 2014, and provides comprehensive clinical care for patients, professional education for physicians, and cutting-edge research. It is a place where new treatment options for patients are being explored and where medical professionals can learn about the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). (Information found @ https://www.ehlers-danlos.com/eds-center-for-research-clinical-care/)
The first educational conference was held on September 15, 2014 where a team of around 100 doctors and medical professionals worked together to start making the lives of their patients better. I was diagnosed with Ehlers Danlos Syndrome in October 2014 in my 30’s. My diagnosis came only 6 weeks after the first educational conference was held. I currently live in one of America's small towns being treated by a Doctor who knows very little if anything about treating this rare genetic anomaly.
Doing an online search I learned there are currently 1.1 million doctors in the United States. This number includes 160,000 that are no longer practicing medicine and approximately 55,000 that are not accurately classified. If less than 100 knowledgeable doctors are attempting to help somewhere between 385,000 to 1,540,000 people across the world with 1.1 million doctors working in the United States alone how do I find the necessary care I need to keep being ‘Me’? Imagine being diagnosed with a medical condition where you go into a doctor’s office with something that cannot be seen nor felt by the Doctor examining you. This Doctor has had little to no education on what is going on with and you are supposed to trust the professional opinion they give regarding your medical care. This is what happens each and every time I step through the doors of a Doctor’s office.
Another tough fact to face, there is also a 50% chance with each pregnancy, I may have passed this on to one of my children. It’s a hard thing to hear even though I had no idea I was a carrier of something so life altering until after all my children were already born.
If you ever talk to someone who has been diagnosed with EDS you will hear many of the same stories regarding medical care. When being referred for countless x-rays, CT scans, MRIs and other tests due to pain, dislocations and subluxations, Radiologists don't generally find anything to confirm the issues because things seem to look normal. Cardiologist know something is off but they just can't seem to figure out why. Gastroenterologist hear the symptoms being brought to their attention. Only, all the testing they do is normal. Neurologists have a lack of knowledge and understanding due to lack in research from complications that can be caused by EDS. Rheumatologists are often the ones who diagnose this rare syndrome. After diagnosis, the patients are left with more questions. These patients don't fit the box for the type of conditions treated and treated as their symptoms are all in their heads. Many medical specialties are like this. Getting access to care is extremely difficult. Patients with not only EDS but also many other rare medical conditions have to fight the medical systems everyday. This is something many Veterans also face after injuries.
It is much easier to tell patients they are depressed, anxious, a hypochondriac, or have some other psychosis. They are often sent to a psychologist, or psychiatrist, and/or prescribed mind-altering medications that may change normal levels of serotonin. These medications can have life altering negative side effects. Being prescribed medication for depression is done often. These are some of the exact things Veterans are facing each day while they fight to gain treatment for their invisible illness and injuries. PTSD and TBI cannot be seen. EDS is also invisible. The Collagen EDS effects is everywhere in a human body. This collagen cannot simply be replaced by drinking a health shake, or taking a pill, just as the brain cannot be regenerated after a severe trauma. EDS is not caused by depression. It is something that happens during fetal development. Symptoms progress throughout one’s lifetime. Often the pain is overlooked as growing pains during childhood.
Being one of the 385,000 to 1,540,000 in the world or one of the attempting to be treated by one of the 100 specialized doctors is exhausting. There are 327.16 million people in the United States with approximately 1,635 to 6,544 people affected with EDS.
How are 100 knowledgeable doctors from a conference in 2014 supposed to treat 1,600 to 7,000 patients in the 3.797 million square miles in the United States alone. These same doctors will also be expected to educate the 1.1 million other doctors who need to know how to treat their patients with this rare disease? What is going to be done to educate those same doctors on the statistics of the injuries our Veterans have endured and are now facing after the wars over the last decade?
I’m a mother, a caregiver and a fighter. I am sick. I am 1 of 1,635 to 6,544 people living amongst the 327.16 million people in the United States with Ehlers Danlos Syndrome. I am attempting to find proper medical care from a knowledgeable doctor so I can continue to care for my disabled Veteran, my children and most importantly, myself. I want to live my life, enjoy the time I have, travel and do the things we couldn’t because of my husband’s commitments to the military. Unfortunately, my reality has changed, many times. What was supposed to be ended in a helicopter crash- We adapted and overcame by learning a new normal. Now, We are attempting to do it all again this time facing my disability. As a family, we learned to adapt and overcome. I will not stop fighting.
Educating for the future,
The Caregiver
