Life with stripes… Stripes? Let me explain. Doctors are taught the phrase “When you hear hoof beats think horses, not zebras.” This is meant to teach them to think of the most common cause for their patients symptoms, and not jump to the rare things first. Most of the time they are right, the hoof beats are horses (common illness) but sometimes it is a zebra. The zebra is the Ehlers Danlos Syndrome (EDS) mascot, because the condition is rare and often misdiagnosed by doctors. My name is Michelle, and I am a zebra.
I was born with EDS, a connective tissue disorder. It affects my whole body, my skin, joints, autonomic nervous system, blood vessels and organs (particularly my stomach and intestines.) EDS causes extremely hyper flexible joints. Its fun while your little and you can show off your cool bendy joints, but as you get older you get too flexible and your joints start to dislocate easily. I dislocate on average about 30 joints everyday. Tendons, ligaments, and cartilage are also very weak and fragile, so they tear and injure while doing everyday activities. I do physical therapy twice a week to try to strengthen my joints, but that is about all that is available for treatment currently. EDS can cause a variety of other conditions. Think of a tree, EDS is the trunk and from it stems other conditions or branches.
One of these branches is Postural Orthostatic Tachycardia Syndrome (POTS). This means that my body doesn’t regulate the blood flow to my brain correctly. When a person stands up their autonomic nervous system tells your blood vessels to constrict forcing blood to your brain. Blood vessels are conveniently made out of connective tissue, so mine are very weak and stretchy. This means that when I stand up the blood pools in my legs because my blood vessels are too weak to push the blood to my brain. This causes me to feel very light headed and even pass out from standing up. I recently got a PICC line placed. This is a tube that is threaded through my arm and up into a vein that sits just above my heart. This allows me to do home and mobile infusions of saline, or as us POTS patients think of it as liquid gold! Getting regular saline infusions helps boost my blood volume as POTS causes it to be lower than normal, it makes me less dizzy when standing or walking, and it gives me a boost of energy and keeps me hydrated. I have trouble hydrating myself because of Gastroparesis.
Gastroparesis is another one of the EDS branches. Gastroparesis means slow emptying of the stomach contents. My stomach holds on to everything that I eat for hours longer than it should. This causes lots of stomach pain and nausea. Because of this I only eat a little amount of food each day and have a very limited diet. I also get very dehydrated which is another reason why saline infusions are very helpful!
The last branch is Mast Cell Activation Syndrome (MCAS). Think of this as allergies but on steroids. It is caused by overactive histamine responses in the body. We are just starting to learn about this one and how it affects me. So far we have learned it causes rashes, headaches, stomach pain, extremely sensitive skin, and more that we are still figuring out.
So as you can see I’m a zebra, but I’m more than my illness. I try my best to live as normal of a life as possible, and I refuse to let it define me. This is the way God made me and I may never know why, but I will embrace it and I hope to use my story to bring hope and encouragement to others.
If you would like to learn more about Ehlers Danlos Syndrome you can check out this website, it is full of information!