Living life with multiple chronic illnesses…. and some other stuff!

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 Story

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.

~Kerrilynn

Videos of my experiences can be found on my YouTube Channel.


7 Comment(s)

  1. stripes

    October 17, 2011 at 4:04 am

    ihi, i live in the uk and would love to link up with you to help make people more aware of eds. like you school was horrible and i was accused of lying about my condition. i was also diagnosed at 25 (im 27 now) i was lucky enough to find the top consultant and get admitted to a specalist unit for physio rehab. my aim is to make as many prople as possible aware of our condition (Im not entirely sure how to go about it) my mums cousin who lives just outside denver is waiting for her diagnosis at the moment. would love to do a joint awareness project with someone on the other side of the pond! let me know if youre interested. i also put up with the dysautonomia, cfs and the rest. hopefully between us we can make a change and show off our stripes.
    take it easy
    stripes XX



  2. Taylor

    January 13, 2012 at 10:49 pm

    I have some questions about EDS.
    When I was in 6th grade I dislocated my knee and I went to an orthopedic and she told me and my parents that it was growing pains but kept me in an immobilizer for eleven months, soon after I got done with physical therapy, I dislocated my other knee (7th-8th grade) and she told me for the second tie that it was just growing pains. I recently dislocated my knee for the third time (10th grade) and now she is telling me it is all in my head. My parents scheduled me for a second opinion, but before I was able to get to my appointment I had to be put on crutches. Within a week I had to go to the E.R. because of my hip and then the following day they took me again for hip problems and lower back pain. I have a friend and a teacher that has EDS and they say I’m showing classic symptoms; I was wondering if this does actually sound like beginning signs of EDS or am I looking at this all wrong and going crazy?



    • Kerrilynn

      January 13, 2012 at 11:06 pm

      Hi there Taylor,

      I am so sorry for all that you are going through! Definitely get a second opinion, preferably someone who knows something about EDS. Definitely sounds like you could have EDS, or at the very least, Joint Hypermobility Syndrome. JHS is very similar to EDS except that JHS doesn’t seem to have the systemic complications that EDS has, that is, the trouble remains in the joints. That’s not to say that it’s not as painful or as bad, it’s just a bit different. Hang in there, and if you don’t have any luck with the next doctor, find someone else! Don’t let yourself get bullied by dr’s who think it’s in your head. It’s not, there’s clearly something going on with your joints! Google “gene reviews ehlers danlos syndrome” you’ll find some really good and credible information. Good luck!



  3. Tay

    May 2, 2012 at 12:00 pm

    How did you get a Dr to take you seriously and give you help? I can relate to your symptoms and what you’re going through. But when i go to a local rheumatologist and got told after he did a physical and i showed him my “party tricks”, i was told to strengthen my muscles and i’d be fine in six months. It has been just over a year and i am much much worse. The dr’s aren’t that great or knowledgable in my area, infact i had to search my syptoms and then ask the same Dr that said i was just fine if i could have a severe case of hyper mobility, it wasn’t until then he sent me to the rheumatologist, who told me to go to a Physio, who told me there is nothing they can do for me and it was pointless me going there. None of them gave me blood tests or xrays. I don’t know where to look anymore. No one i meet will see these diseases as a life altering issue. I’m nineteen and i live like a eighty year old… The pain started in 6th grade when my knees kept popping out, but no one did anything about it. It took until my spasms started for my family to even take notice. How does someone go about getting diagnosed and the proof? Are there any real and good websites that could help me?



    • Kerrilynn

      May 2, 2012 at 1:43 pm

      Hi there Tay! I am so sorry that you are struggling so much. Where are you located? I may be able to help you find a specialist nearby. The problem with Ehlers Danlos and hypermobility is that it’s not well known and many doctors and physical therapist equate the hypermobility of EDS to the flexibility of gymnasts and dancers. They are VERY different, as I’m sure you know! If you are on Facebook, you should join the group “Ehlers Danlos Syndrome – Zebras Need Zebras.” There are all kinds of people with varying symptoms of EDS who are very supportive and willing to help in any way they can. Hang in there, hon! There are knowledgeable doctors out there! I’ll do what I can to help you out!



  4. Tay

    May 7, 2012 at 8:54 am

    Thank you so much for replying. I live in Wollongong, Australia, an hour from Sydney. I have been bashing my head against a wall for years trying to find an answer and to find anyone like me and although it saddens me greatly that someone else has to go through this, it in a way comforts me knowing i’m not alone. Thank you so much for putting this information out there and for doing what you’re doing. It really means so much and really helps.



  5. brokenground

    December 9, 2013 at 6:22 pm

    Hi Kerrilynn,

    My name is Monica. I’m 30 years old. I have EDS 3, Undifferentiated Connective Tissue Disease (we thought it was Lupus for years), Fibromyalgia and I have just discovered that I probably have Asperger’s. I am also an artist, graphic designer/art director and writer.

    It’s amazing for find others so similar!



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