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My Life changed by Elders Danlos Syndrom

First off I must explain what Elders Danlos is! There are six major types and five minor types. The cause is unknown but they know it is a variety of gene mutations that causes problems with the collagen, the material that provides strength and structure to skin, bone, blood vessels, and internal organs. It also effects the fibergene which is the part that holds blood together and clots the blood, this cause the bleeding disorder I have. The symptoms are double- jointed; Fatigue; easy damaged, bruised and stretchy skin; easy scarring and poor wound healing; flat feet; increased joint mobility; joints popping; early arthritis; joint dislocation; joint pain; premature rupture of membranes during pregnancy; very soft and velvety skin; vision problems. Some signs of EDS that are different from the symptoms can be deformed surface of the eye; mitral valve prolapse-heart deformity; periodontics; soft, thin, or very stretchy skin; they can test for the collagen mutations in some forms of the illness; and if the heart form then an echocardiogram.

Now the treatment is the worst part. This is because there is none! They can do physical therapy and sometimes this helps sometimes makes it worse. The doctors can also prescribe bracing to support the joint and help but this does not prevent pain. Complications with this illness can be chronic joint pain, early on-set arthritis, failure of surgical wounds to close or stitches tear out, rupture of blood vessels, and sometimes rupture of the eyeball!

Now don’t get me wrong I don’t have every symptom but I have most of them. I guess if I had to say the worst of all of them is that it is hereditary! Meaning my mom has the dominate gene and because all my brothers and sisters have this illness! Which means all of my children will have it and all of there’s will. Now that’s not saying they will have it in its worst form. Out of all my brothers and sisters I have it the worst.

First thing I want to talk about is the doctors. Since I was born with this illness and my mom has the pain too the doctors though I was just impersonating her, because it is rare to be born with fibromyalgia, which is what she was though to have had. If you aren’t familiar with Fibro then it is a chronic pain disorder that you sometimes develop it is another that they aren’t sure why it occurs and they have no cure for it. The doctors have always said that I was just trying to get attention and others said it was growing pains. After I grew to the point that I shouldn’t have this “growing pains” they sent me to specialist after specialist. Most of the appointments I left balling because they either said deal with it or that they couldn’t help me. Then finally this spring I got sent to Dr. Vanderwild. He is an orthopedic surgeon. He took a look at me and wanted me to get my vitamin D tested and start on a 5000mg vitamin C supplement. He said that I fit the criteria for vitamin D deficiency. I got it tested and low and behold I was deficient! So he also said that the vitamin C would help with pain because it does something to the fibergens in the muscle that gets inflamed. So I was put on a 5000 mg vitamin C and 5000 IU vitamin D supplement. He decided that the knee wasn’t the problem, so he sent me to his friend that dealt with ankles.

Dr. ShurZad was his friend and he was an ankle and foot specialist. He looked at me and said that I should get an MRI on my knee again to make sure nothing is wrong and to see if something is going on like inflammation because I have severe pain in this area. The MRI showed nothing! I was dumbfounded. Me knee hurt and I couldn’t even do P.E. without crying and there was nothing wrong. Was I wrong, am I sociologically damaged like they though to begin with! So we met with him again. He did X-rays on my knees, ankles, and feet. There was nothing visibly wrong. He admitted that he couldn’t find any thing but that he believes there is something up. I liked these doctors they believed me but they had no answers. So I was sent back to the Ione clinic. Jodi suggested that I go to a genetics specialist in Seattle to try to get tested again, in 2008 I was sent here but for one I was too young and two they didn’t have an idea of what to test for. So my mom was looking for any closer ones because we had no money, let alone enough to go to Seattle.

We go to a genesis in Spokane; she does a bunch of mobility tests. She measures my height and arm span. In this illness you arm span is longer than your height and mine was. I was 5’6” and my arm span is 6 feet. Also your fingers and toes are abnormally long. Mine are. She tests my mobility and I can bend my thumb to my fore arm. She sees that my shoulder pop out of joint and same with my hips! She diagnosis me with Elders Danlos Syndrome type three. There are no tests other than the ones she did. There is no cure. There is no treatment other than strengthening exercises. She told me it will get worse as I grow up. This is a lie most likely my joints will get stiffer. But the fact is that I have the joints of a 45 year old. This is because of the hyper mobility and this causes arthritis.

This illness has cost my social life too. In grade school I had one friend her name is Ashley Grew and she will always be my friend. I love her to death. All the other kids in my class saw that I was different than them so they made fun of me. I couldn’t explain what was wrong with me because I didn’t know either. All they new was that I limped and there was a couple times I was either on crutches or in a sling. Now I am excepted into social groups a little more because I can tell them that I have an illness that causes me to hurt and they seem to take it better than I don t know.

Mentally it has changed me to because I was second guessing myself. I was asking myself, Am I crazy? Is this real? No one cares and no one believes me. I don’t want to have a kid and give this to them.

Physically it affected me to. My knees hurt so I didn’t do as much. My whole body hurts all the time. I always did things different than others. I bend different. I have to wear these big clunky braces, and I can’t do many sports because they hurt. And I twist my knees and ankles all the time.

This illness causes pain all the time. There is never a day without pain. Some days the pain is more and some days less. My knees and shoulders and ankles are usually what hurt, but lately my back too.

I found this poem and it made me cry because I can relate…
I walk on these weakened legs
and collapse to the floor.
I laugh at the jokes about me
but I can't take anymore.

It's hard to grasp
knowing this is how I'm going to be,
knowing that this body
will always be against me.

I can't properly use my arms,
and most likely never will,
and because of the damage done
their tremors never still.

My life is full of doctors,
surgeries, and pain.
Most never get to hear
the story I retain.

Those who daire to listen
will never quite understand.
I don't really expect them to
because no one really can.

I've got Ehlers-Danlos Syndrome,
a rare and lifelong fight.
My future's unpredictable
But I know I'll be alright.

Furthermore, I know that I will have an amazing life and that I just have to keep my head held high because maybe someday doctors will have more knowledge on the subject and maybe I will meet someone with this disease to.




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