I’m Tiffany, a mom of three. Mason is 8, Sydney is 5, and Maddox is 2! My husband is Bryan.
About 3 years ago, after my oldest son had an incredibly hard recovery from a Tibial Torsion Surgery, we knew something else was going on. We went to countless appointments, and had specialists evaluate him. After extensive genetic testing, he was finally given a diagnosis of Ehlers Danlos Syndrome, classical type 1 with hypermobility, and two genetic microduplications. One that can contribute to Spectrum type disorders and another to aneurysms. He was diagnosed with Sensory Processing Disorder, and every 3 years he needs an echocardiogram.
Ehlers Danlos Syndrome is a defect in the connective tissues. It can be characterized by, joint hypermobility, dislocations, subluxations, pain in joints. Also, skin hyperextensibility, and slow wound healing. Mason will get an injury, and it can take a normal scratch months to heal, and then he has either very thin scars, or very thick ones. His skin is very soft, and very fragile. His hands and feet sometimes will turn purple or a very intense red color. He can and does often dislocate his shoulders. This started last summer after he tried to scratch his back, and his shoulder came out of socket. Since that time, all he has to do his raise him up and slightly back, and he can dislocate his shoulders. A few weeks ago we had our first knee cap dislocation.
At 5 years old, we had no way of knowing what Ehlers Danlos Sydnrome would look like for Mason. Even now at 8, its hard to imagine what it will look like years from now. The hardest part of EDS for my husband and I, is just simply not knowing. Not knowing if we are making the right choices to protect his body. Not knowing if he will be able to grow up and move out, and live successfully on his own. As he gets bigger will his pain get greater, and harder to manage? No one can answer these questions truly. We can guess, and we can hope, but for now, we manage what we can, protect his joints as best as we can, and move forward.
We take each day as it comes. Some days, you could never tell that Mason has pain. Other days, he cant walk, or stand without feeling like he will fall over. His legs will hurt so much his feet turn purple, and he needs to carried. His knee has started to bow out, a condition called ‘genu varum’ or ‘varus of the knee’. This isnt as common in Ehlers Danlos Syndrome, but can be a variation of normal. He was just fitted for a full leg brace, and an AFO on the other leg. Hopefully, we can get his leg straight again, before he grows again. The older Mason gets, means he gets bigger. Which in turn means that his joints have more weight to support, his body has to work harder to keep things in the correct places. Growth spurts are exceptionally difficult for him to manage.
Being a parent of a child with an invisible illness is a whole new world, i didn’t realize had to exist. The constant need to explain yourself, explain your child, and the decisions you make each day. The doubt that people have, because on the days that people see him, hes doing great. We choose activities carefully, and plan ahead for pain.
Id like to use my voice, and my platform to talk about Ehlers Danlos, and the weight on a parent with a child with an invisible, or visible disease. I know that I could use the support, a place to put my words, pour out my heavy heart, and to give a hug with my words to another parent who feels this same weight.
-With Love, Tiffany