In a telephone interview yesterday May 14, 2013 a Reflex Sympathetic Dystrophy patient stated she has temporarily lost custody of her 16 year old son to Department of Services for Children, Youth and Their Families (DSCYF) and they are trying to remove her 9 year old daughter. The patient from Delaware shared that the vibrations and sensitivity to her hearing has been documented by her doctor and that children services believes she has a mental disorder.  Apparently a case worker for the State did a search for CRPS/RSD and found an article which included “Emotional Disturbance” as part of the condition and is using this against her.

Let me try to be more specific while CRPS/RSD can cause a number of secondary symptoms it absolutely does not mean everyone will have them. Unless your doctor has diagnosed you with a mental disorder I do not think this type of state worker is qualified to do so this way. And certainly not by Google search.

Jim Moret, Host of Inside Edition, Attorney and Author of The Last Day of My Life describes his own journey with his son’s CRPS diagnosis in When Pain Becomes the New Normal. 

Many of us already face the stigma involved with Complex Regional Pain Syndrome formerly known as Reflex Sympathetic Dystrophy first discovered during the civil war by Silas Weir Mitchell. It is not a mental disease or disorder. It is a physical condition which begins with physical characteristics and symptoms.  www.powerofpain.org  www.rsds.org

Because this illness is so misunderstood and because there are still so many that are uneducated regarding it’s existence patients face anything from “but you don’t look sick” to “you must be a drug seeker”.  This disease does not discriminate! Even children can develop it.

A very high percentage of us, I don’t have the exact statistics, yet I’d guess it to be in the high 90 percentile were active members of society, we worked, raised children, were active in our lives, if single parents raised children alone, some of us had everything, others like myself had enough to just be happy.

Now let me ask you this…

Why would we give all that up for this?

I admit I worry about the single mothers out there with CRPS/RSD who lack family support.  Especially when the family does not believe in the illness and when the patient is on disability and the family thinks the patient should be working. Again no education and understanding.

Many don’t even want to know. Do you know how many times I have listened to patients tell me how they tried to reach out to their families, spouses, children with educational material, videos etc, just to learn those people were not interested?

To me it’s no different than learning about Parkinson’s, Heart Disease, Diabetes or any other illness. Would you be interested in that?

This is why ongoing awareness for Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy is so very important and why the power of community is just as important.

There are many disabled parents out there in the world caring for their children.

Each CRPS/RSD patient should be treated on a case by case basis, we should not all be clumped together, one size does not fit all, but the diagnosis is the same.

Autumn asks for your help. She asks that anyone who can come forward to write a letter on her behalf, make a phone call or support her in any way to email her at: Autumn Stevens

~Twinkle VanFleet