The Official Website of the Acid Maltase Deficiency Association

It is difficult to say what is impossible for the dreams of yesterday are the hopes of today and the reality of tomorrow. - Robert H. Goddard

Editorials

Pompe Disease—By a Pompe Patient

By: Dawn Harris Kendall posted on: December 01, 2009

Living with Pompe

Elizabeth Nunnery takes her infant daughter, Zoe, to the hospital at 8:30 in the morning.  A nurse verifies Zoe’s medical information and hooks Zoe up to machines monitoring her blood oxygen level, heart rate, and respiration rate.  They take Zoe’s blood pressure and temperature.  A numbing cream is put on Zoe’s skin, above the port that she had surgically implanted in September.  A doctor cleans and sterilizes the port, a needle is inserted, and everything is taped into place.  Around 11 o’clock, the IV bag is placed on a pole and Zoe begins to receive her enzyme replacement.  Six and a half hours later, Zoe is unhooked and sent home.  They will repeat this process every two weeks for the rest of Zoe’s life. 

Dawn Kendall’s husband, Chuck, picks her up from the chair and helps her walk to the bathroom.  He helps her change into pajamas and he walks her to the couch.  He removes her socks and picks her feet up so that she can lie down.  He positions her so that she will not fall off the furniture.  Usually Kendall can crawl up the stairs to the bedroom, but today is a bad day.  Kendall cannot walk without assistance.  She has diminished lung capacity.  She gets headaches from straining the muscles in her shoulders and neck as she struggles to move.  She is still recovering from misdiagnosis and medication that caused additional health issues, including high blood pressure, low blood sugar, anemia, Vitamin D deficiency, hot flashes, cold sweat, and digestive problems.  She can no longer get out of chairs, lift her legs, or raise her arms straight over her head. 

Zoe Nunnery and Dawn Kendall have Pompe disease.  There is no cure.

To read full article, please click here.

Disclaimer: The AMDA does not endorse any of the products, medications, treatments or information reported herein. The website and its contents is intended for informational purposes, only. We strongly advise that you discuss all medications, treatments, and/or products with your physician.

Address: AMDA PO Box 700248
San Antonio, Texas 78270 USA