If you hear hoofbeats…
…think horses, not zebras. That’s what most medical students are told. Go for the obvious. What happens when the obvious turns out to be incorrect? For some, the answer is treat the symptoms. It may work, it may not. For others, they are told it’s “all in their head” or it’s “conversion disorder” or “somataform disorder” and to get help. Still even more get shipped from specialist to specialist trying to figure out their symptoms. For many it’s an exhausting, trying, painful road to find the diagnosis they need. That’s how it was for me.
My name is Kerrilynn and I am 27 years old. I have Ehlers-Danlos Syndrome Type 3 with some vascular involvement. Secondary to EDS, I also have Dysautonomia which is a malfuction with the autonomic nervous system, my heart-rate is too high ranging from 90 to 140 just from getting up to get a drink or climbing up the stairs, conversely it can drop to below 60. I also have a very low blood pressure, which tends to stay around 90/55, it ranges from 70/40 to 130/90. The dysautonomia causes me to be very fatigued and tired easily. It’s very common in people with EDS. I am permanently disabled and am currently confined to a wheelchair. I have frequent dislocations and subluxations, sometimes more than 20 times a day. I was only diagnosed when I was 25 years old.
I’ve had health problems since I was a baby. I was born with a dislocated collarbone and was a colicky baby. As a toddler I was “pigeon-toed” and had to wear braces on my legs and feet in attempts to straighten them. When I was about 10 years old I started to have knee problems and got my first knee brace, at that time I was diagnosed with Condromalacia Patellofemoral Syndrome.) When I was in my teens, I was always twisting, spraining, or injuring something in someway. I was often considered a hypochondriac. When I was 16 I threw my shoulder out from spinning flags (I was part of the flag squad). During competitions I had to wear a sling and dance and perform. I had to ice it immediately after the performance. My senior year in high school is when it started to get really bad. I had horrible hip pain and was on crutches for 3 months and had to use a cane for a few months after that. My classmates were very horrible to me, calling me the “uninjured gimp.” While dealing with classmates, keeping my grades up, and just dealing with highschool and preparing for college, I was also having to go for all kinds of tests at the Boston Children’s Hospital. I was tested for a barrage of things, from Lymes Disease, Lupus, Bone Cancer, etc. Never occurred to them that I could have EDS, they may not have even been familiar with it since it’s so rare. They finally diagnosed me with Undifferentiated Arthritis and Chronic Pain Syndrome and prescribed Physical Therapy. I dealt with the pain and went on with life. After I graduated college, the pain started to get worse and I saw a new Rheumatologist who did a series of bloodwork and I came back with a positive HLA-B27. So then they thought I had Ankylosing Spondylitis and sent me for MRI’s and Xrays, not much showed up so then the diagnosis got changed to Undifferentiated Seronegative Spondyloarthropathy. The doctor tried a bunch of different medications that didn’t help and basically gave up on me. I sort of gave up on trying to find out what was wrong too.
I started having problems again and looked through some support groups and came across a “Ehlers-Danlos Syndrome and other general hypermobility conditions” forum. So I checked it out (I was told I had very loose joints by the Boston Rheumy). Everything that these people described made so much sense. Then I looked at pictures of people who had EDS and the things that they could do, well I could also do these things. So I did more research and the more I read the more it made sense. I printed out some information and the Beighton scale and brought to my primary (that I have now) and she was familiar with the condition but didn’t know much about it. She had me do the Beighton Scale (to test for hypermobility type EDS) and said it was very likely and sent me to the Geneticist who confirmed the diagnoses. Since then I’ve found some really amazing doctors in the area (from a local friend who also has EDS) who know what EDS is.
Since being diagnosed with EDS, I have also come to learn that I have Sensory Processing Disorder. This means that my brain can not organize sensory input which overwhelms my nervous system which interferes with social interactions and functioning in everyday life. There are a handful of doctors and scientists that believe Sensory Processing Disorder is a form of mild/high functioning autism. I recently have been given a confirmed diagnosis of Asperger’s Syndrome. I will go more into that on another page.
I still struggle daily, still have horrible days, and ok days. I am pretty much home bound, so I do a lot on the internet. I am involved with several support groups. My hope is to become and ambassador for people living in chronic pain. I want to spread awareness of this condition and the conditions that tend to come hand in hand with EDS, such as Dysautonomia, Chronic Fatigue Syndrome, Fibromyalgia, etc., as well as Sensory Processing Disorder and other Autistic Spectrum Disorders.
Videos of my experiences can be found on my YouTube Channel.