#RareDiseaseDay2015

In honor of #RareDiseaseDay2015, the FH Foundation has created this beautiful infographic about HoFH.  Click on the word “infographic” above to be taken to the file on their page with live links.  #ShareRare

“It’s important to remember that HoFH is a serious and life-threatening medical condition. HoFH leads to progressive and early heart disease in men and women, as well as boys and girls. Serious heart valve narrowing can cause heart attacks in people under the age of 10! That’s why if you or your child are diagnosed with HoFH, one of the first steps to take – as soon as possible – is to consult a lipid specialist.”

Something new everyday

Everyday I learn something new about this disease.  The day we went to Johns Hopkins to meet with her doctor, I learned that the chance of being diagnosed with HoFH is 1 in a million.  I learned there are approximately 400 people living with HoFH in the United States.  I learned that diet and exercise, although important for those diagnosed with HoFH, will have little effect on her overall numbers and do little to improve her prognosis.

About a week or two after she was diagnosed when I went looking for others who were diagnosed with HoFH, I learned there were no Facebook pages or groups specifically for Homozygous Familial Hypercholesterolemia.  There are however, a total of three Facebook pages on the topic of FH, including a discussion group with, as of this posting, 379 members.

Today, I learned that our library has zero books on HoFH and zero books on FH.  Zero. Zip. Nadda.

Really?!