RSD Interview with Anita Rhoades Henslee

HOW AND WHEN DID YOU GET RSD?

My daughter got RSD in 1987, at age 9, when she knocked an iron off a tall shelf onto her right ankle. My son got RSD in 2000, at age 13, when injured in his right ankle during athletic training. I got RSD in 1995, when I had a car accident and my right ankle was dislocated and torn to the bone.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

It was a nightmare with my children because of the helplessness I felt when they were in pain, and I could do so little to help them. I first ignored what I knew was RSD with me because I was taking care of my son, and I wouldn’t admit that I had RSD.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

The main support system I have is online support groups. My husband does take care of my basic needs when I am unable to do so.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

I rely on it to calm me down when I feel overwhelmed, and I try to stay grateful to Him for what He has given me. When my son, who had RSD, died at 18 yrs of age, I relied heavily on my faith to get me through, and still do.Though (technically) my son died in an auto accident, I believe (from witness accounts), that he had a seizure, since he had those occasionally after being diagnosed with RSD. The toxocology report showed no drugs or alcohol in his system. I believe RSD did kill him, just indirectly, and it is not on the death certificate.
The only comfort I can feel in my tremendous grief is knowing he is in Heaven where he is no longer in pain.

HOW HAVE YOU REINVENTED YOURSELF?

When my daughter was diagnosed with RSD, I found out how to be a real advocate for good medical care. That was not easy at that time, when even less was known about RSD. It has helped me to be more assertive in that area for other family members, friends, and myself. I have had to accept not being able to work. Accepting that I was disabled was humiliating and depressing. I have had to find other ways to feel useful, like helping those with RSD and grieving parents. My daughter has been in remission for 22 years, and I spread the word to give hope to others with RSD.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

As a parent seeing and hearing your child scream from unrelenting pain, it is hard to see much good. I would say it has made me more compassionate toward others.

WHAT THINGS DO YOU MISS THE MOST?

I miss being able to walk fast, plant a garden, go to any event I choose. I miss being able to work, of course, and the financial freedom that comes with that.

WHAT DO YOU WANT THE GENERAL PUBLIC TO

KNOW ABOUT YOU AND/OR YOUR DISEASE?

I want them to know that RSD/CRPS is real and that more research needs to be done because a lot more people have this than the general public realizes. I want them to know that if someone they know has this, to give them some of their time, like they would someone with a well-known debilitating disease. A phone call or card, or casserole or short visit can mean so much!

*THESE ARE GENERAL QUESTIONS. IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.

Even people who have RSD believe that it is not genetic. The truth is, as far as I know, no research has discovered any gene for RSD, therefore not enabling us to know if there could be a genetic factor or not. I know that my family is not the only one with multiple members having RSD. I have talked to other mothers that have RSD and have a son or daughter or two children, like me, with RSD. The medical community needs to become more aware of this.