Approximately on or about August 23, 2008, Dawn complained weakness, she lost her appetite. After speaking to her doctors, it was determined she was tired from the increase in physical therapy. She was given a prescription to enhance her appetite. However, by the 26th of August 2008, Dawn was completely paralyzed from the chest down. Late August or early in September 2008, Dawn was diagnosed with a rare disease called Devic’s Disease. My daughter is one of my heros. I can count on one hand he days she felt anxious or depressed. She has been very positive usesing humor to help cope with her disease.
DEVIC’S DISEASE
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.
Devic's disease affects only the optic nerves and spinal cord, whereas MS affects the brain as well.
Attacks of Devic's disease tend to be more frequent and severe than in MS, though this is not always the case.
An MRI of the brain is typically normal in Devics disease, although this is not always the case; in MS the MRI of the brain typically shows many areas of inflammation.
An MRI of the spinal cord shows large extensive areas of inflammation of the spinal cord whereas in MS typically the areas are much smaller.
Spinal fluid studies tend not to show the typical elevation of antibodies detected in patients with MS, although occasional patients may show this abnormal pattern of antibodies.
Outcomes of Devic's Disease
The course of Devic's disease is highly variable. It largely depends on whether there is a tendency for relapses to occur after the initial flurry of symptoms that leads to the diagnosis.
In general, attacks of Devic's disease tend to be more frequent and severe than they are in MS. The major risk to patients is severe damage to the upper spinal cord, which can lead to inability to breathe on one's own. This may be fatal. However, some patients with Devic's disease seem to enter a long period of time where the disease remains stable. Devic's disease has not been studied in large enough populations to predict the outcome of individual cased with great certainty.
Complications of Devic's Disease
Permanent blindness may occur in one or both eyes. Permanent loss of strength or sensation in the arms or legs may occur. Inability to control the bowel or bladder function may also occur.
At any point in this disease, patients may develop sudden brief, repetitive spasms. These spasms may also occur in MS, but they are very common in Devic's disease. With these spasms, patients develop prolonged tightening of arms and legs that last for 15 seconds to 2 minutes. They may be painful and recur several times a day. In most cases, they respond very successfully to treatment with an anticonvulsant medication.
Through it all, I took notes and kept diaries regarding Dawn’s care and the toll her medical problems took on her and the family. I am turing the diary into a short story.
Message Of Hope
My Daughter, Dawn Sheckles
By Sheila Jean - Simone Sheckles
Please pray for Dawn and her family that God's will be done on earth as it is in heaven, amen!
Sheila has created the SistaMoon Foundation, a non-profit organization to help raise funds for research and support for individuals diagnosed and affected by the rare disease called Devic’s Disease. My daughter Dawn was diagnosed in September 2008. This foundation is necessary due largely in part because this disease is so rare and under diagnosed and there are so few people to conduct scientifically valid clinical trials. According to the Walton Clinic in England, "it doesn’t make business sense to pharmaceutical companies to spend huge amounts of money on relatively rare illnesses." It is the goal of my foundation to raise so much money that will shame the pharmaceutical companies into action. This disease has been known about in Europe for years but there is little known about it in the United States. I am going to bring so much attention to this disease in the United States and with God’s blessing raise billions of dollars in Jesus name.
Hope Is On The Horizon
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To Learn More About Devic's Disease, Please Visit:
The Sista Moon Foundation For Devic's Disease
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