Help Bring Awareness to Devic's Disease

I am Shelia Sheckles the Founder and CEO of SistaMoon Foundation for Devic's Disease also Known as Neuromyelitis Optica.  I created the Foundation in honor of my Daughter Dawn, who was diagnosed with Devic's Disease in September 2008. The SistaMoon Foundation, is dedicated to bringing awareness to this rare and often fatal disease.

I have been trying in more ways than one to bring awareness to a rare and often fatal disease known as Devic's Disease also known as Neuromyelitis Optica. Although many people who have Devic's Disease suffer and some die, I have been told that it is not a news worthy issue.
Although 80-90% of people who have Devic's Disease are women, it is a disease that attacks men and children as well.

Because my daughter's Neurologist at the time of her (acute episode), did not recognize or identify the symptoms of Devic's Disease, she suffered, paralysis (quadriplegia), blindness in her right eye and 4th degree burns to her right hand. She was also given another patients medication as well as dropped several times while in the hospital and or nursing/rehabilitation center.  Because I literally stayed at the facilities my daughter was admitted to, I could not return to my career. Every day I visited my daughter three to four times a day to ensure her safety while she was in care. The few times I went home, she was injured or put at risk. It must be noted that my daughter was in a nursing/rehabilitation center because home she needed 24 hours 7 days a week care. This included getting up every two hours to clean and turn her to help reduce or eliminate skin breakdown and infections. She went into care because I could not physically or medically provide care for her and Home Healthcare can only provide services (CNA, Physical and Occupational therapy) 2-3 times a week for 1 hour. A nurse was allowed to come by periodically. When my daughter suffered 3rd and 4th degree burns (burned to the bone) it was me who provided the primary wound care. She was seen by a wound care doctor one or twice a week and she was seen by a hand surgeon about the same amount of time. The home healthcare Nurse came to the home about once a week or as needed due to insurance issues.

 I am certain that if Home Health Care Agencies  could provide more care, many people would not put their loved ones in nursing homes. Because many people have to work, they have no choice but to place their loved ones in nursing homes. Most people can not afford to quit their jobs. I was able to live off what money I had until the money was gone. Then I had to move in with my mother. My mother decided to come out of retirement at 68 to work to helped me be able to stay with my daughter and provide her with in home care.

When a nurse gave my daughter medication that belonged to another patient, I was forced to remove her from the facility in a fragile state for her safety. I was told that no plan of correction could be implemented and my daughter nor the family could be ensured the mistake would not happen again due to " human error".

 You may ask how Devic's Disease ties into to this story. I will tell you. If the Doctor was aware of the symptoms of Devics's Disease; 1. Optic Neuritis and 2. Transverse Myelitis, my daughter would not be in a wheelchair now. If the Therapy Department had listened when they were told that due to my daughter's disease, heat was not a recommended form of treatment (she had a loss of sensation and could not feel) she would not have had 3rd and 4th degree burns and the loss of movement in her right hand. If Devic's Disease is not news worthy, I do not know what is. I will continue to do my part to bring as much awareness to this disease as I can. I will not stop.

Our goal is to bring awareness to this disease to every person, every Doctor every medical facility and make it a part of every medical schools curriculum. We ask that you join us in our endeavor to spread the word about this disease. Tell someone, tell everyone you know.

We are asking Congress, Senate Majority Leader Harry Reid to help make September National Awareness Month for Devic's Disease.

Devic's disease is an inflammatory disease of the central nervous system in which there are episodes of inflammation and damage to the protective covering of nerves that almost exclusively affect the optic nerves and spinal cord. It can cause temporary or permanent blindness in one or both eyes. It can also lead to varying degrees of weakness or paralysis in the legs or arms,as well as painful spasms, loss of sensation, and bladder or bowel dysfunction from spinal cord damage.

For more information about Devic's Disease and The SistaMoon Foundation visit the website at www.sistamoonfoundationfordevicsdisease.com