Had an appointment with my GI doctor yesterday Dr. Kuhn… I’ve been going to him for the past 7+ years trying to find an answer to my pain. He never gave up and told me he never said couldn’t help anymore, he kept searching for answers to help me. Hes the main doctor who got me to where i am today being diagnosed with Ehlers – Danlos Syndrome.
I was going to him for abdominal pain, We did test after test and we couldn’t figure it out..it was a long road to a diagnosis. He never gave up on me so i never gave up on him! He was such a sweet, caring, passionate doctor who cares about every single patient, you can tell he loves his job.
Dr. Kuhn if you’re reading this, thank you again for everything you’ve done for me. Thank you for sticking with us and not giving up! You by far is the greatest doctor I’ve ever been to and i’m sure others could agree! Thanks for taking care of me and i wish you a happy rest of your career! #1 Doctor!!! Bless you’re heart!
Sorry it’s been a couple days! I’ve had a lot going on! But…guess what!!
I’M GOING TO PROM!!!!
I’ve always wanted to do prom and dress up! As I got sick i lost hope of going to prom, I switched to different schooling and lost contact with most friends. After I got my EDS diagnosis ruled out I tried getting back in touch with people I knew and was friends with.
My beautiful friend Alyssa asked me to go to prom with her! ❤ That really makes me happy and I’m lucky to have her as a friend!!
Stay posted for more about prom and My life with EDS!
Well, I finally found a doctor who knew what EDS was! We went to a local clinic with one of the younger kids and i had put a packet together about EDS to share. As I was trying to share the information she acknowledged knowing what EDS was. Oddly enough, they thought she may have had it at one point. She was sent to Johns Hopkins in Maryland for evaluation. Luckily, she did not have it, but she was adamant that this was an outstanding hospital for evaluation. She was pleased with how friendly and caring they were. Way to go Johns Hopkins!!!!!
Look forward to new post soon!
EDS is a group of inherited disorders that affects your connective tissues and is caused by abnormalities in
the structure, production, and processing of Collagen.
Collagen is the main protein in skin and other connective tissues, such as tendons, ligmants, skin, cartilage, bones and blood vessels.
There are six major forms of EDS:
- hypermobility :
- Classic : Often mistaken for Hypermobility and has more significant skin and soft tissue manifestations. Connective tissue disorder characterized by skin hyperextensibility (Excessive stretching of the skin), abnormal wound healing, and joint hypermobility (joints that move beyond the natural range). It includes two previously designated subtypes (EDS type I and EDS type II).
- Vascular : Usually manifests thin, translucent skin, fragility of soft tissue and scarring. Predisposition to spontaneous rupture of hollow organs (primarily arteries, intestines, and uterus.)
- Kphosoliosis : deformity in the spine caused by an abnormal curvature of the vertebral column. It is a combination of kyphosis and scoliosis. Kyphosis is an excessive curvature of the spine in the (A-P) plane.
- Arthrochalasia : autosomal dominant, rare, and dstinguished by congenital hip dislocation and more severe skin manifestations Skin hyperextensibility with easy bruising. Tissue fragility including atrophic scars ,Muscle Hypotonia (Hypotonia means decreased muscle tone.) ,Kyphoscoliosis ,Radiologically Mild Osteopenia (bone density that is lower than normal peak density but not low enough to be classified as osteoporosis.).
- Dermatosporoxis : soft, doughy skin that is extremely fragile; saggy, redundant skin, especially on the face; hernias; and mild to severe joint hypermobility.
I have the hypermobility type. This form is usually considered one of the least severe types, however; serious musculoskeletal, skin, and soft tissue complications occur more with this type. It mainly affects my joints and bones and makes it hard for me to do day to day things. It’s hard for me to stand for long periods of time, and do stuff like climbing steps and even washing my hair.
Today i felt more exhausted than i have been in about a week. I was dragging trying to find things to keep me awake and busy. I decided to write the doctors that have helped me and cared for me in this journey. I wanted to make it special so i decided to do it myself. Went to the store to buy some blank cards and some decor for them. As I got home i realized i grabbed envelopes instead.. ugh.
My pain and soreness is still bad from the other day, i could really feel it in my shoulder and back today. Wasn’t able to do as much as i wanted to which disappoints me. I ended up falling asleep around 3:00pm and slept till around 5:40pm. I woke up tired with a bad headache, which thankfully is starting to go away.
I wish I had energy during the day time as i have a lot of things that need to get done. I feel like i’m not doing enough in my everyday life, i’m either really fatigued or sick. Looking back now at all the things i was able to do and loved like dance it saddens me that i can’t do that anymore. As of now i get tired and achy from washing my hair. How is life going to be as time goes on? Will i have trouble doing more things? These questions i wonder everyday..
My day today was long and tiring. It all started when i woke up, i reached to push my hair behind my ear and my shoulder dislocated. Luckily it popped right back in, my shoulder and the surrounded area is so sore.
Not even 2 hours into the day and i felt so exhausted i could drop. I tried doing everything i needed to do before i took a nap. I then slept for about 2 hours and woke up still fatigued (Some of you can relate if you have chronic illness), as i was walking to get changed out of my pajamas my knee cap popped so loud my mom could hear it in the next room. That was the most painful dislocation i have had all week so far.
For the remainder of the day i tried to keep relaxed and settled hoping to ease the pain, nope..my body didn’t want to cooperate (lol). I have noticed a lot more recently about how much my EDS effects my everyday life, looking back i can’t remember a day where i felt pain free. I don’t know what not having pain feels like, everyday my body aches and i get massive pains in my stomach as to where it doubles me over. To me my pain has become part of my everyday life..To others my pain would be absolute hell.
Everyday has become such a struggle but i can’t let my EDS stop me from everything. I’m strong enough to get through this…You’re strong enough to get through this..We will do it together a step at a time. Were Zebra strong!
Here are some things about me!
What is Collagen?
Collagen is the main structural protein found in skin and other connective tissues and gives support to connect parts of the body together. There is over thirty different types of collagen found within the body. More than 80% of the skin is made up from collagen. It is found in tendons, ligaments, and cartilage around joints and also the blood vessels.
In those who have EDS lack collagen and connective tissues can become weaker, that leads to things like fragile and stretchy skin, unstable and loose joints, fragile blood vessels and body tissue.
Why the Zebra?
According to The Ehlers – Danlos Society those who have EDS identify themselves as zebras! There is a saying “When you hear hoof-beats behind you, don’t expect to see a zebra.” This is because they are taught to look for the more common diagnosis, not the unexpected. EDS is rare, so the medical profession does not look for it, especially in young people. That’s why it is usually under diagnosed or misdiagnosed.
Everyone with EDS has different symptoms, different types, and different experiences. We are all working together to hopefully one day find a solution!