Our story begins with my pregnancy.  Caroline is my third child and my pregnancy was uneventful until, at 35 weeks, my water broke.  Caroline came into our lives later that week weighing a healthy 5lbs 12oz.  I don’t know when I knew definitively that something was different with Caroline but I do remember a nagging suspicion of something being amiss when she was only a few months old.  I vividly remember nearly dropping her when I tried to pick her up under her arms only to have her shoulders give out.  As she became more mobile and active, I began to notice bruises that, although not severe, did not seem to heal.  By the age of 18 months I was seriously worried and by the age of 2 years I was convinced that something was terribly wrong. 

In September of 2003, when Caroline was not quite 2 ½ years old, she had a series of minor accidents – normal childhood tumbles- that resulted in significant injuries that required 8-10 stitches each time in her elbows.  With the third incident, I took her to Children’s Hospital. The emergency room physicians listened to my concerns examined Caroline and agreed that there could be an underlying medical condition.  I left the ER that day with bandages, gauze, antibiotic ointment and an appointment with a pediatric rheumatologist. 

Dr. Calvin Williams diagnosed Caroline with EDS the following week.  I cannot describe the feelings I had that day as I sat in his office hearing the words Ehlers Danlos Syndrome for the very first time.  I remember fear and relief.  Fear of what it would mean for our beautiful, active, vivacious little girl.  Relief that we had a diagnosis. 

The five years since Caroline was diagnosed have been an adventure as we have learned about EDS.  Caroline’s shins, knees and elbows are particularly susceptible to injury.  We have used everything from neoprene wraps – which we called “hot pinks” because of their color- to ace bandages to shin guards to keep her safe and injury free.  She wears safety goggles on the playground and during gym at school to prevent the possibility of eye injuries.  We have made 28 trips to the pediatrician’s office or emergency room for stitches.  Caroline takes glucosamine every day to alleviate the joint pain and slow the development of arthritis.  We have seen countless doctors and specialists at Children’s Hospital.  And we have been to Washington DC to tell our story and lobby for the Arthritis Prevention, Control and Cure Act.

How does arthritis affect our lives?  All mothers remind their children to be careful from time to time.  But, for me, my watchful eye is never turned off.  There is no such thing as a safe activity.  Our repertoire of mantras includes the 3B’s – no bumps, no bruises, no blood and we carry an emergency first aid kit at all times.

There is fear and heartache each and every day.  Fear of the unknown – that this is the day Caroline will have yet another injury; fear that she will be debilitated by arthritis at much too young of an age; my heart aches when I hear someone comment on the scars on Caroline’s legs; my heart aches when I see her playing happily with shin guards and safety glasses in place; my heart aches when I hear her young voice explaining to a new friend that her skin is special so please don’t play rough “I don’t want to get stitches today.”

But with that fear and heartache comes gratitude.  Gratitude that we have a diagnosis and can be proactive in her healthcare; gratitude for the pediatric rheumatologists that we have here in Milwaukee; gratitude for the support of others afflicted with EDS, specifically Lynn Sanders; gratitude for the Arthritis Foundation and their work; gratitude for the countless people who open their hearts and give so generously of their time, talents and resources to help with the fight to find a cure.

Kathy Adams spoke to a group from the WI Arthritis Chapter,  on December 10, 2008.  Below is an except from this meeting.

Kathy talked about how difficult it can be to parent a child with Ehlers-Danlos Syndrome, the Classical Type.

EDS is a  form of  Arthritis that  people rarely hear about.   

Kathy & Caroline Adams