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Patient Testimonials

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 Marius 2008-03 Mieke (Marius' Mother)
25 Maryze 2011-12 Maryze Schoneveld van der Linde
26 Miguel 2008-03 Antonio (Miguel's Father)
27 Mike 2011-11 Mike Stanzione
28 Nico 2008-03 Birgit (Nico's Mother)
29 Nisa 2011-08 Nisa Karatekin (written by her mother Aylin)
30 Noëlla 2008-03 Noëlla
31 Pamela 2011-09 Pamela Pieralli
32 Raymond 2011-09 Raymond
33 Rebecca 2008-03 Rebecca Brooks
34 Ricardo 2008-03 Ricardo
35 Robert 2011-10 Robert van Putten
36 Sam 2013-02 Sam Murduck
37 Sari (Clinical Trial Story) 2008-03 Sari's Parents
38 Theo 2011-08 Theo van der Voort
39 Tiffany (Clinical Trial Story) 2008-03 Marylyn House
40 Trae 2008-03 Trae
41 Wilma 2008-03 Wilma
42 Yen Ling & Wei Ling 2008-10 Lee Yee Seng & Chia Kian Foon (Parents of Yen Ling & Wei Ling)
43 Yves 2008-03 Yves
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International Pompe Association
Contact: IPA secretariat, Paula Waddell, c/o VSN, Luitenant Generaal van Heutszlaan 6, 3743 JN Baarn, The Netherlands
Phone +31(35)5480480, Fax +31(35)5480499, E-mail info@worldpompe.org
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