Living with Pompe disease

Hello guys :) This week we will deviate from the usual scientific jargon
of Pompe disease and explore something closer to real life. We have
previously talked about what caused Pompe disease and what are the
symptoms, but words are just words. We probably have not met someone who
has Pompe in our life (yet), so we would not have any idea how Pompe
patients live their lives and what impact the disease has brought to
them and their families. So today we shall have a quick look into the
lives of Pompe patients via a short video clip, enjoy :)

*Watch the video here!* http://youtu.be/Z_l99WiOE-o


Hope you have gained some insights on the life of Pompe patients and
their families. As you can see, Pompe has a great impact on the quality
of life as even the simplest tasks may be a challenge. The emotional
aspect is also an important area of concern as many people breakdown
when hearing that their loved ones are diagnosed with Pompe. However,
there are support groups available to provide support to Pompe patients
and to help them overcome the emotional burden.

Here is the link to one of the handouts given to Pompe patients to help them adapt to the disease, so do take a look :)

http://www.australianpompe.com/wp-content/uploads/2014/06/pc_08_en_2011_the_emotional_impact_of_pompe_disease1.pdf

So if we do come across someone with the disease we should try to
understand their situation and not judge, because now we have a better
understanding on what they are going through. So do show them your
support and concern! <3

If you have any comments
regarding the lives of Pompe patients or would like to express your
views, please do post them below!! Looking forward to seeing your
comments! :))

See you next time!

Mei Ying