June 29, 2009
SISTAMOON FOUNDATION FOR DEVIC’S DISEASE
BRINGING AWARENESS TO DEVIC’S DISEASE
Since this letter, my Daughter has been able to qualify for Medicaid services and she is able to receive her infusion of Methylprednisolone monthly. Due to funds being available, I am in the position to where I may be able to receive compensation for providing care to my daughter.
Open Letter to the world
This letter was sent to the White House and various other places.
I am aware that health care reform is being discussed by the President and Congress and I would like awareness of a rare disease, Devic’s Disease also known as Neuromyelitis Optica (NMO), to be considered in the health care agenda.
Devic's disease is an inflammatory disease of the central nervous system in which there are episodes of inflammation and damage to the myelin (fatty, protective covering of nerves) that almost exclusively affect the optic (eye) nerves and spinal cord. It usually causes temporary blindness, occasionally permanent, in one or both eyes. It can also lead to varying degrees of weakness or paralysis in the legs or arms, loss of sensation, and/or bladder and bowel dysfunction from spinal cord damage.
Types
It appears as though there are two major types of Devic's disease. In the first type, optic neuritis, (inflammation of the optic nerve), and myelitis, (inflammation of the spinal cord), episodes tend to come very close together often within days or weeks, and there is no recurrence after the initial flurry of symptoms. In the second form, repeated episodes of optic neuritis and myelitis occur that are separated by months or years.
Differences from Multiple Sclerosis
In well established cases of Devic's disease, it is usually possible to accurately tell the difference between Devic's disease and MS. However, early in their course, it may be difficult to definitively separate these two conditions. However, there are some differences.
This is a health care issue. So many of the individuals diagnosed with this disease can not work; because their disability payments may be a dollar or so over their states Medicaid requirements, they can not get full coverage. I say that every American who is disabled should automatically be eligible for Medicaid & Medicare.
Every month my daughter, who has been diagnosed with Devic’s Disease in September 2008, has to have monthly infusions of Methylprednisolone (IV) as a part of her treatment. However, Medicare will not pay for this treatment. The only way Medicare will pay for this treatment is if she is receiving in home health care services, which would be a regression. She is in out-patient physical/occupational therapy. She does not qualify for Medicaid due to the amount of her disability payments. I can not work due to her needing twenty-four hour/seven days a week care. There are no programs to pay me therefore, we live with my mother who had retired as a Social Worker, but went back to work for the school board here in Nevada. I have created the SistaMoon Foundation for Devic’s Disease in honor of my daughter and others who have been diagnosed with this disease.
Our goal is to make every Doctor and every person in America aware of Devic's Disease. It is our mission to ensure that every Medical Facility that is researching this disease maintain contact with each other to ensure continuity of care. There is a lot of information on this disease but it seems as though no one is sharing their information with the other. There needs to be annual collaborations between the leading researchers. Sometimes I believe the researchers are battling with respect as to who is right or wrong with respect to the cause of this disease, or the proper treatment. Every person, Senator, Doctor, Medical student, Mayor as well as the President of the United States should be made aware of this disease. As a matter of fact this rare disease should be made a part of every medical school in the world’s curriculum. It affects 80-90% of women and 35% African Americans are often mis-diagnosed with Multiple Sclerosis (MS). Mis-diagnoses means improper treatment.
There are so few resources in the State of Nevada to help provide services for the disabled and their family members. I cannot work due to being the primary care giver for my daughter. Although I provide care for my daughter because I love her and I know it is my obligation, I do not get paid to do so, which causes a financial strain. I am a college graduate who was a public servant for many years.
There are so many people who do not have available resources and it is my goal to raise funds for support of individuals with Devic’s Disease. Support can include but is not limited to the following:
1. Payment for overnight respite care or more if needed. Care Givers need time to make sure their needs are met thus preventing burn out.
2. Payment for someone to get to the Mayo Clinic or research center of their choice for medical treatment.
3. Provide payment for Personal Care Attendants after home health care ends.
4. Donation(s) to the Mayo Clinic in Scottsdale Arizona to continue their research regarding Devic's Disease.
Since I have started the foundation this month, I have been contacted by others who have been diagnosed with this horrible disease. They are willing to tell their stories and help me put faces to this disease. During my research of Devic's Disease/NMO I found other foundations regarding research for Devic’s Disease (NMO). However, they appear not to be focusing on the people who are diagnosed and affected by this disease rather, their focus appears to be more of a scientific approach. I approach this issue in a humanistic and scientific way.
Thank You,
Shelia Sheckles
Founder & CEO
SistaMoon Foundation for Devic’s Disease
