Because You Loved Me
Please help my family and I and sign this petition that will allow others to hear us when we ask for help with trying to make a very rare genetic disease in my family to be known about all around the world; it is called Gerstmann Straussler Scheinker
If you or a beloved family member or friend have been diagnosed with any disease or medical condition; whether you have been cured or treated; whether this person has passed away or is currently suffering, I ask everyone to please read this.
Genetic Disorder - A disease or condition caused by an absent or defective gene or by a chromosomal aberration, as in Gerstmann Straussler Scheinker Syndrome.
What is Gerstmann-Straussler-Scheinker Disease?
Gerstmann-Straussler-Scheinker disease (GSS) is an extremely rare, neurodegenerative brain disorder. It is almost always inherited and is found in only a few families around the world. Onset of the disease usually occurs between the ages of 35 and 55. In the early stages, patients may experience varying levels of ataxia (lack of muscle coordination), including clumsiness, unsteadiness, and difficulty walking. As the disease progresses, the ataxia becomes more pronounced and most patients develop dementia. Other symptoms may include dysarthria (slurring of speech), nystagmus (involuntary movements of the eyes), spasticity (rigid muscle tone), and visual disturbances, sometimes leading to blindness. Deafness also can occur. In some families, parkinsonian features are present. GSS belongs to a family of human and animal diseases known as the transmissible spongiform encephalopathies (TSEs). Other TSEs include Creutzfeldt-Jakob disease, kuru, and fatal familial insomnia.
Is there any treatment?
There is no cure for GSS, nor are there any known treatments to slow progression of the disease. Current therapies are aimed at alleviating symptoms and making the patient as comfortable as possible.
What is the prognosis?
GSS is a slowly progressive condition usually lasting from 2 to 10 years. The disease ultimately causes severe disability and finally death, often after the patient goes into a coma or has a secondary infection such as aspiration pneumonia due to an impaired ability to swallow.
~This disease has taken many of family members, friends, and total strangers. It is time for us to be heard and enough is enough. Please help "Because You Loved Me" spread the word and gain awareness about this horrifying disease that is taking our loved ones away too soon. Along with gaining awareness, we created this foundation to raise money to help find a cure/treatment, as well as money for medical expenses. We are very strong and determined to get our message to Congress.
Please visit our website at www.becauseulovedme.com.
Tell your mother, father, sister, brother and whoever else you love every single day of your life. Never end on a bad note. Never say goodbye, always say see you soon. Life is too short and we are all on borrowed time. Lets make every minute and every signature count.
May god bless each and every one of you.
Genetic Disorder - A disease or condition caused by an absent or defective gene or by a chromosomal aberration, as in Gerstmann Straussler Scheinker Syndrome.
What is Gerstmann-Straussler-Scheinker Disease?
Gerstmann-Straussler-Scheinker disease (GSS) is an extremely rare, neurodegenerative brain disorder. It is almost always inherited and is found in only a few families around the world. Onset of the disease usually occurs between the ages of 35 and 55. In the early stages, patients may experience varying levels of ataxia (lack of muscle coordination), including clumsiness, unsteadiness, and difficulty walking. As the disease progresses, the ataxia becomes more pronounced and most patients develop dementia. Other symptoms may include dysarthria (slurring of speech), nystagmus (involuntary movements of the eyes), spasticity (rigid muscle tone), and visual disturbances, sometimes leading to blindness. Deafness also can occur. In some families, parkinsonian features are present. GSS belongs to a family of human and animal diseases known as the transmissible spongiform encephalopathies (TSEs). Other TSEs include Creutzfeldt-Jakob disease, kuru, and fatal familial insomnia.
Is there any treatment?
There is no cure for GSS, nor are there any known treatments to slow progression of the disease. Current therapies are aimed at alleviating symptoms and making the patient as comfortable as possible.
What is the prognosis?
GSS is a slowly progressive condition usually lasting from 2 to 10 years. The disease ultimately causes severe disability and finally death, often after the patient goes into a coma or has a secondary infection such as aspiration pneumonia due to an impaired ability to swallow.
~This disease has taken many of family members, friends, and total strangers. It is time for us to be heard and enough is enough. Please help "Because You Loved Me" spread the word and gain awareness about this horrifying disease that is taking our loved ones away too soon. Along with gaining awareness, we created this foundation to raise money to help find a cure/treatment, as well as money for medical expenses. We are very strong and determined to get our message to Congress.
Please visit our website at www.becauseulovedme.com.
Tell your mother, father, sister, brother and whoever else you love every single day of your life. Never end on a bad note. Never say goodbye, always say see you soon. Life is too short and we are all on borrowed time. Lets make every minute and every signature count.
May god bless each and every one of you.
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