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The lives of Pompe patients can vary greatly. We can experience different symptoms, and have different rates of progression, yet we all have the same disease.

In an effort to broaden the knowledge available about Pompe’s disease and how it can effect a person’s life, several patients have written down their stories. Below are these stories (click on the table header to sort by a column):

 

# Patient Name Date Article Author
1 Anouk (Clinical Trial Story) 2008-03 Anouk's Parents
2 Arno 2008-03 Arno's Parents
3 Azaria 2011-10 Jo (Azaria's Mother)
4 Bartjan (Clinical Trial Story) 2008-03 BartJan's Parents
5 Benthe 2011-11 Jeroen and Mirjam (Benthe's Parents)
6 Betty 2008-03 Betty Cook
7 Bob 2012-03 Bob Morrison
8 Caitlin 2012-03 Ruby Naldoza
9 Cynthia 2008-03 Cynthia
10 Frank 2011-08 Frank van de Zand
11 Helen († 30 Nov 2012) 2011-11 Helen Walker
12 Ismael 2011-07 Ismael Portilho
13 Jamie 2011-12 Jamie Muir
14 Jared 2008-03 Jared
15 Jayne 2008-03 Bronwyn (Jayne’s Sister)
16 Johan 2011-11 Johan Bakker
17 John 2011-08 John and Val Shaw
18 Juan 2011-12 Juan Magdaraog
19 Karen 2008-03 Dirk & Hilde (Karen's Parents)
20 Karl-Heinz 2008-03 Karl-Heinz
21 Lisa Louden 2008-03 Lisa Louden
22 Lucas 2011-04 Javier (Lucas' Father)
23 Malcolm 2008-03 Malcolm
24 Maryze 2011-12 Maryze Schoneveld van der Linde
25 Miguel 2008-03 Antonio (Miguel's Father)
26 Mike 2011-11 Mike Stanzione
27 Nico 2008-03 Birgit (Nico's Mother)
28 Nisa 2011-08 Nisa Karatekin (written by her mother Aylin)
29 Noëlla 2008-03 Noëlla
30 Pamela 2011-09 Pamela Pieralli
31 Raymond 2011-09 Raymond
32 Rebecca 2008-03 Rebecca Brooks
33 Ricardo 2008-03 Ricardo
34 Robert 2011-10 Robert van Putten
35 Sam 2013-02 Sam Murduck
36 Sari (Clinical Trial Story) 2008-03 Sari's Parents
37 Theo 2011-08 Theo van der Voort
38 Tiffany (Clinical Trial Story) 2008-03 Marylyn House
39 Trae 2008-03 Trae
40 Wilma 2008-03 Wilma
41 Yen Ling & Wei Ling 2008-10 Lee Yee Seng & Chia Kian Foon (Parents of Yen Ling & Wei Ling)
42 Yves 2008-03 Yves
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