Here, you’ll find stories from people with Larsen syndrome. Learn about their experiences, their challenges, and how they’re thriving!
Shawnett
I am Rare! I am 1 in 100,000!
Larsen’s Syndrome is a rare congenital and genetic disorder that affects every joint in my body, my hearing, and many of my organs.
Here are some facts about Larsen’s Syndrome and me:
• Larsen’s Syndrome was a spontaneous occurrence for me despite it being a genetic disorder. No one else in my family has it.
• I have never had any surgery to correct anything the Larsen’s Syndrome has caused or created except for my ears. I’ve had many surgeries on my ears due to chronic infections and trying to restore hearing some how.
• I have no hip joints, no knees joints, dislocated ankles, bilateral shoulder and elbow dislocations and bilateral clubbed feet, Webbed toes, and Deafness.
• I am missing two vertebrae’s in my Spine, and some parts of my spine didn’t develop properly and fused together. My spine is deformed and squishes my rib cages into my lungs causing the inability to fully expand them leaving me with chronic respiratory issues like infections and spasms.
• I have chronic pain from top of my head to the tips of my toes daily (every part of my body).
• I can walk, but due to my non-existent joints, everything is loose and it’s very painful. Because all my body knows is to use its muscles to move, that’s how I can still manage to do it!
• I fight everyday very hard just to move my body and go on about my day. It’s a struggle that will last my whole life and it’s the struggle I am willing to fight through everyday!
•Despite the challenges, the tears, the pain, I love who I am with a disability! I wouldn’t change who I am for anything. I am proud to be part of the disability community. Yes I do wish the pain was not here or at least not as bad but I try not to let it define me or take me down. Sometimes bad days can do just that but we have to remember we are all entitled to have our moments or our days but never let it consume you or control you. You are in control!
• I love being an advocate and a voice for the disability community.
• I love advocating for the legal Medicinal use of Medical Cannabis. I am fighting hard to help get it legalized here in the State of Texas!
• Driving is challenging and causes a lot of pain for me but I am so blessed and thankful for the ability to drive. Driving is one of my favorite pass times. I love to travel and I love my music and thinking time. I can’t wait for the day I get an accessible vehicle though! That will be life changing and a game changer.
• Because I don’t have knees, I can bend my leg at a 90 degree angle the wrong direction and it freaks people out and it’s funny! Painful to do but funny to see the reactions.
• My fingers are unique. I can point to something and then point at something else in the opposite direction while still pointing the first way with two different bones in my fingers due to the muscles and dislocations. Oh and peak around the corner with the tip of my finger
My family knows this one trick well!
• I can’t touch my shoulders but I can if I cross my hands
• I’m short – 4 ft 10 in.
• My Deafness was a bilateral severe hearing loss and over time and come to Deafness and will progressively get worse, but I have faith that my hearing will do what it wants when it wants because God has it under control!
• I’m not afraid to be myself so much anymore. Old habits die-hard sure; I still don’t like exposing my legs and ankles, I still don’t like to walk in front of people due to how I look when I walk and all the teasing and bullying but I’m slowly learning that no one’s opinions of me really matter. It’s my own opinion that matters and I love me! I accept me! I’m slowly learning that it’s ok that I am different; baffles me because I’ve been told that all my life and now at 27 I’m just now getting it lol!
• I get to do some cool things and have some really unique opportunities because I have a disability.
• It is a battle daily for those of us with disabilities to be respected, treated equally, and have what we thing is fair access to proper equipment to live our lives. I absolutely hate that things that can better our life in a way that makes us do things any able-bodied person can naturally do is so hard to come by, obtain, or be understood! (I don’t know if this one came out the way I need it to be understood): I’m trying to say that equal access and equal opportunities should not be a barrier we as people with disabilities face.
• One last fact I’ll give is this; if you don’t remember any of the things I’ve shared with you about my disability, please remember this: Ask questions respectfully and directly, be kind, be patient, do not be patronizing, do not talk to us adults like we are children, do not assume cognitive disabilities for all people with disabilities, don’t hush your children or usher them away from us. Let them ask their questions; education and acknowledge is key to reducing bullying! Please, respect the equipment we use, but most of all Do Not Patronize Us! If you pat me on my head and tell me “good job,” I’m going to bark in your face like the dog you are treating me like. And I may even run you over with my chair! Look out 😂
Click here to read Jonathan ‘story.
Want to submit your story?
Please email your story along with a photo to: ellen@larsensyndromeresourcecenter.com