Lynn Sanders is a volunteer for the Arthritis Foundation and started her own foundation called Ehlers-Danlos Syndrome Network C.A.R.E.S. INC, where she also volunteers her time as one of the Board members.   Lynn has been very active in helping to educate her Members of Congress about arthritis and EDS and the affect it has on her life.

My name is Lynn Sanders.  I have a rare arthritis condition call Ehlers-Danlos syndrome.   As a child I had lots of sprains, dislocation, and joint pain.  Most of my joint pain started at the age of 15 years old.  Doctors, back then, told my parents that I had growing pains and they would eventually go away.   

My diagnosis finally came at the age of 28 years old when I was pregnant with my third child.  I had a lot of problems with this pregnancy, and my doctor sent me to a genetic doctor.  This doctor reviewed my medical history and told me that he thought I had a rare condition called Ehlers-Danlos syndrome.  Believe or not I was actually was happy to finally get some answers to my years of joint problems and pain.  Now, it was time to learn as much as I could about EDS, which there wasn’t much information out there, and I had to learn to live with my condition, as well. 

Ehlers-Danlos syndrome refers to a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. The cause is genetic defects that disrupt the production of collagen, a chief component of connective tissue.  Ehlers-Danlos syndrome is relatively uncommon.  Treatment usually focuses on managing the signs and symptoms of the particular type.

Over 13 years ago, I decided to become involved with helping families with Ehlers-Danlos Syndrome (EDS).  I wanted to learn as much as I could about my syndrome that not even physicians and nurses knew much about.  I helped start the first local branch in the Milwaukee area and then started another local branch in Madison, a few years later.  I love helping people, and I wanted people who suffer from EDS to learn more about their rare syndrome.  I wanted to help them learn to live with this disorder.  I didn’t want anyone to feel alone, like I did when I was first diagnosed.  Thirteen years ago, I started out with two families and now we have over 200 families. 

Lori Obluck of the Wisconsin Chapter, Rep. Paul Ryan (R-1), and Lynn Sanders

Since EDS is a form of arthritis, I decided to join the Wisconsin Chapter of the Arthritis Foundation.  Last year, I became the Chair of the Chapter’s advocacy committee and am also serving as an Arthritis Ambassador.  For the last two years, I have participated in the Advocacy Summit and working to help pass the Arthritis Prevention, Control and Cure Act.   

As a volunteer for Ehlers-Danlos Syndrome and the Arthritis Foundation, I consider both groups like family.  It doesn’t matter what type of arthritis you have; it’s all about helping people.  All of my volunteer work has been an enlightening journey for me.  By staying active and focusing on a mission, I have less time to think about myself and the pain that I live with each and every day.  Through volunteering, I have received many personal rewards and a much unexpected bonus.  This year I was very surprised and much honored to receive the “Distinguished Service Award” from the Wisconsin Chapter.  Volunteering has helped me better understand people and myself.  I believe this is truly my calling; touching the lives of people I know or may never know.

Interested in becoming more involved with the Advocacy Network? Would you like to help build a personal relationship with your Members of Congress and share how arthritis has affected your life and the lives of others? Consider becoming an Arthritis Ambassador. Contact the Public Policy Department – 202-887-1700 or advocacy@arthritis.org for more information.