October is Niemann Pick Disease Awareness Month
So much of this blog is devoted to Type C, the variant that Dan had. But there are other types. Below is a booklet published in the United Kingdom about Type B, which is the non-neurological type of Niemann Pick Disease.
I invite my Type B friends to provide their thoughts in the comments (if they want).
A Practical Guide to Acid Sphingomyelinase Deficiency - Niemann Pick-Disease Type B
The Niemann-Pick Disease Group (UK) in tandem
with an educational grant from Genzyme, A Sanofi Company, developed this
guide with the help of parents and caregivers of children, young people
and adults affected by Acid Sphingomyelinase Deficiency (ASMD) NPD Type
B.
A Practical Guide to Living with ASMD Niemann-Pick disease type B (NP-B)
aims to provide practical information, reassurance and support to those
living with ASMD NP-B. The NNPDF is thankful to the NPD Group UK for
making this booklet available to our US and Canadian families.
Posts
Hi Jill,
ReplyDeleteI did not know that this month was Niemann Pick Disease Awareness Month. Thank you for all that you do for this cause. It's sad that you lost your son because of it. I do, however, admire your strength and courage in bringing it to the public's attention. I pray that someday I can read the headline on your blog that no other child will be taken before his/her time because of this disease.
I hope your baby girl is doing well and looking forward to her first holiday season.
It's great to see you link up on the Thumping Thursdays Blog Hop. Thank you.
Sincerely,
Karina
http://www.momintheusa.net