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

The writer represents the 84th District in the Ohio House of Representatives.

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