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Madeleine's Mighty Fight Against EDS

  • 5 min read

My EDS Diagnosis

I first heard the term Ehlers-Danlos Syndrome (EDS) back in the summer of 2018. I discovered it by watching some YouTube videos; little did I know that randomly clicking on these YouTube channels would change my life forever. After watching these YouTube videos, I realized they encompassed many similarities to my symptoms. I started researching more about EDS, and finally, I thought it was time to see a doctor that was knowledgeable about EDS in hopes that they could help me.

I went to a family medicine doctor who had previously worked with EDS patients. He referred me to a geneticist who officially diagnosed me with Ehlers-Danlos Syndrome type 3 or hypermobility EDS. The geneticist and I tried to piece together all the symptoms I have had my entire life, which made her diagnosis even easier. After I got my official EDS diagnosis, I spoke to my primary care provider about all of my other unexplained symptoms; I was then referred to several different specialists.  I received diagnoses of Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), Adrenal Insufficiency, Fibromyalgia, Small Nerve Neuropathy, Asthma, Esophageal Dysmotility, Intestinal Dysmotility, Chronic Gastritis, Migraines, Sleep Apnea, Anemia, Anxiety, and Depression. If you’re wondering if this list is long, it definitely is, and I still don’t even have all my diagnoses because my doctors and I are still trying to figure out my symptoms.

My Implanted Devices

I currently have two permanent implanted devices in my body. I have a port-a-cath in my chest and a Gastro-Jejunal(GJ) feeding tube. I have had both of them for about eight months, and they have been lifesavers for me. I have my feeding tube due to esophageal dysmotility, chronic gastritis, and intestinal dysmotility. Having these disorders caused me not to digest and absorb my food correctly. Having a GJ tube means I have access to my stomach and my jejunum, which is the second part of your small intestines. I take all my medications through my J-tube because medications were one of the things I struggled to swallow because my esophagus wouldn’t allow the pills to go down. I also get  continuous nutrition through this tube. I get a unique formula that is already broken down, so my body doesn’t have to work as hard to get the nutrients. I am hooked up to my feeds 24/7, which means I get the cool trick where I can eat while I sleep. My G-tube is the tube in my stomach, which gives me access to my stomach. I use this tube for something called venting and draining. I mainly use this tube for venting, which is where I can drain out stomach acid and air that is making my stomach hurt or distended. 

I also have a port in my chest, which, as discussed earlier, is a central line, a catheter/tube that goes directly to my heart. A port is implanted under the skin and is accessed by putting a needle through the skin and into the port itself. I had to get a port for my treatment of IV hydration. I have a disease called Postural Orthostatic Tachycardia Syndrome (POTS). This disease can have many different symptoms, and for me, it means presyncope, syncope, extreme fatigue, dizziness, high heart rate, low blood pressure, and many more. I tried all the standard drugs for POTS, and none of them seemed to work. Then I saw a doctor who recommended IV saline.

I started the treatment with peripheral IVs, which is the typical type of accessing veins like how you would get blood drawn, but with EDS, my veins couldn’t hold up to the constant poking. My doctor decided to place a port because this was going to be a long term treatment, and I needed access to my circulatory system. So this means there is a needle in my chest 24/7, and I get the IV hydration every day. This is where my Care+Wear chest port access shirt came in handy. I love this shirt because there’s nothing like it. I use this shirt when I have to change my dressing, anytime I have to get blood work done, and anytime I know I am going to be at the doctor in which they will need to use my port. I also wear it as a normal shirt because it is incredibly comfortable and stylish.

Life In A Wheelchair

I have been using mobility devices for a couple of years now. It started with ankle braces and ankle stability devices such as AFOs. I also have custom knee braces to help me walk with more stability. But about a year ago, my mobility and fatigue became so severe that walking far was impossible. I started using a wheelchair about a year ago to help my mobility for longer distances. I started using my wheelchair more and more, and I was struggling to propel myself. I bought a pair of regular bike gloves, which gave me a better grip on my push rims. But when I saw that Care+Wear had wheelchair gloves, I knew I needed them because they are specially designed to assist with grip and protect your hands. They have helped me so much with gripping my wheels to push better and conserve energy.

Coming To Terms

Accepting my reality was extraordinarily challenging and did not happen overnight. There were days I wanted to quit and go back to the life I had previously led. It has taken me years to come to terms with these diagnoses because I have had to change my entire life to accommodate my daily symptoms and restrictions. Things that I had been doing all my life now had to be changed or even stopped. One of the toughest pills to swallow was having to give up on my athletics and workouts. As a child, I was extremely athletic, up until I was a senior in high school. It was a significant adjustment for me because that was my entire life, and it was my biggest stress reliever.

A Positive Outlook 

Consequently, I had to find another way to relieve my stress. I began watching TV shows, playing Xbox, sewing, and gardening, but training my own service dog has been my most significant time investment. I have had to adapt to take extreme caution in my activities both inside and outside my home. Through the adaptations I’ve made, I have taught myself to look at these treatments and cautions as ways my life is better now;  previously, I had been struggling on the daily because I was always sick and my quality of life was abysmal. That is one thing that my psychologist has taught me, in addition to recognizing that I was struggling way more than I would have admitted. I am embracing the new normal. I have learned that healing is not linear; I have had many ups and downs. However, I am learning how to make them smaller so that when I have a down in which when I’m not doing great, I am still able to function left, whereas before when I was in a down, I was in the Emergency Room and could barely function. I also now take advantage of my good times and try to get as much done as possible.

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