Yesterday I was looking at one of my friend’s Face Book pages and I saw Alexa Simmon’s Memorial Page as one of her “Likes”.  I was confused, not quite grasping what that meant, and then I saw it.   Alexa had died on October 6th, at 22 years old from complications of Ehlers-Danlos Syndrome.  I just kept looking at it in disbelief.  I had not been a close friend of Alexa’s.  We were fellow “Spoonies”, both members of the message boards of But You Don’t Look Sick.  We were friends on Face Book, giving each other support and hugs whenever we would see each other on our Face Book streams, she was always so positive and cheerful.  She knew my blog.  I had last spoken to her through Face Book in late September.  She had been in and out of the hospital a lot and I would always reply “Keeping you in my thoughts and prayers” or “Wishing you extra Spoons.”

I know a lot of people who are in and out of the hospital, but they always seem to rally, you know? They are fighters and you don’t even dream that some day they may lose their fight, especially someone as young and special as Alexa.

Her father, Scott Simmons, describes Alexa as a woman who “lived despite all Ehlers-Danlos Syndrome threw at her…She did so many wonderful and thoughtful things for so many afflicted with EDS, and other diseases around the globe…I am not sure whether I will ever fill the hole in my heart, but I will try as she would have wanted all of us to carry on…She will continue to live on in all of us for the rest of our lives.”

Many people, I would venture to say, are reading this and wondering what Ehlers-Danlos Syndrome is.  I had never heard of it until I became a part of But You Don’t Look Sick in 2004 after being diagnosed with Rheumatoid Arthritis in 2003.  EDS is a group of disorders that affect connective tissues that support the skin, bones, blood vessels and other organs. The disease can run the gamut from mildly loose joints, which I have, to life threatening complications.

EDS is a very difficult disease to explain to people, even to me.  Currently there are six major types including the hypermobility type, the dermatosparaxis type and the vascular type. Symptoms vary depending on the type and degree a person has the disease, but include frequent dislocations of joints, stretchy skin which can bruise easily and cause abnormal bruising and scarring.  And some forms of EDS, including the vascular and kyphoscoliosis type can involve serious and possibly life-threatening complications.  Blood vessels can unpredictably tear causing internal bleeding, stoke and shock.

About 1 in 5,000 individuals worldwide are affected with some type of EDS.  This is the face of one of them.

Alexa, a friend to many, a daughter, a sister, a grandchild, and a “Zebra”, a name people with EDS are known as because EDS is considered a rare disease.

I am using my blog today to mourn the loss of one of my fellow chronically ill sisters gone way too soon, but whom I know is at peace.

May God bless you and keep you, Alexa.  May you be dancing in Heaven and doing the other things you once loved again.

(The main purpose of my blog was to bring attention to a friend I have lost and to tell you more about EDS.  I am including a way to donate through the Alexa Simmons fundraiser page to the EDS Network CARES Research if you should feel so moved.  Please do not feel any pressure to donate but know that even one dollar can add up to many. Thank you.)

http://www.firstgiving.com/fundraiser/InMemoryofAlexa/scottsimmonsfundraisingpage

Learn more:

Ehlers-Danlos National Foundation

MedicineNet.com

The post For Alexa first appeared on Mama Sick.