|
|
 |
|
The
views expressed
on this page are soley those of the author and do not
necessarily
represent the views of County News Online
|
 |
State Representative Jim Buchy
Raising
Awareness of Krabbe Disease
Krabbe disease is an often fatal degenerative disease that destroys the
protective coating on nerve cells in the brain and the nervous
system. This rare disease has effected several families locally
including that of Madison Layton who passed away after battling the
disease from birth to her second birthday. It is in Madison’s memory
that the second week in September will be designated as Krabbe Disease
Awareness week.
Krabbe disease comes from receiving two copies, one from each parent,
of the mutated gene. The disease often shows in infants but has been
known to be delayed and show up later in life. Symptoms include
progressive loss of developmental abilities, progressive loss of
thinking skills and muscle weakness. Treatments such as stem-cell
transplants have shown promise but there is still more work to be
done in order to provide care for individuals with this disease.
Krabbe is scientifically known as globoid cell leukodystrophy and is
related to many leukodystrophys such as ALS. Krabbe results when cells
in the brain start to break down because some of the processes and
components in certain cells are not working properly. More
commonly doctors see similar break down of brain cells in Alzheimer’s
and Parkinson’s. However, these diseases are very different from Krabbe.
Affecting 1 in 100k raising awareness about this rare disease is
important in order to encourage continued research to help the patients
being impacted by this disease. In Ohio, the legislature and Governor
have recognized the need for awareness.
Krabbe disease awareness week is not effective as law until next year
but the mission of raising awareness starts now. We must bring
attention to this disease so more effort can be put into screening,
treatments and potentially finding a cure.
Please give me your opinion on this topic and others in the news this
month by completing an online survey at tinyurl.com/buchyseptember2015
|
|
|
|
