Patients Helping Patients

Here you find a list of articles contributed by individuals of the Pompe Community. You can just browse the list below and sort it by clicking on the column headings.

All articles are tagged for easy display of articles for a specific topic. In the right-hand column you can list all tags or show all articles for a specific tag.

This is a living list of articles. So if you want to share your experiences please contact us.

Home Ventilator Guide (updated 24 – 03 – 2011)

The International Ventilator Users Network (IVUN) has a developed the Home Ventilator Guide compiled by Judith R. Fischer. The comprehensive resource displays technical information about the world’s home ventilators in charts that are easy to read and makes comparing home ventilators more convenient. It features bilevel positive airway pressure ventilators, volume-cycled ventilators, pressure support ventilators,...
Author:
Patients Helping Patients
April 19, 2011

Always warm feet with heated socks

Many of us know the problem, cold feet… and not just cold feet, but the one that colours your feet blue/purple. Especially wheelchair users are affected as they don’t move a lot and their blood circulation kind of stagnates, so the warmth will not arrive in their feet. For me the problem became more and...
Author:
Patients Helping Patients
April 19, 2011

Ventilate yourself manually with an ambubag

I do travel a lot and that means that I often use my manual wheelchair. When I don’t travel I use my electrical wheelchair that has the ventilator attached to the back of my wheelchair, so I can use the ventilator when I like during the day. In my manual wheelchair, however, it is not...
Author: Maryze
Patients Helping Patients
April 19, 2011

Wash your hair without water

Many wheelchair users know that it is often difficult to wash ones hair when travelling. Even when one uses a so called disabled room or wheelchair accessible room in a hotel it often lacks the right shower chair or doesn’t have one at all. Most available shower chairs are too small and don’t provide any sitting support...
Author:
Patients Helping Patients
April 19, 2011

Turning yourself around in bed with an electric turning aid

For several Pompe patients it can become difficult or impossible to turn around in bed independently. This also happened to me. When this problem started to appear in my life, I looked for a solution to be able to stay as independent as possible, also during the night. I didn’t want to be a burden to my caregivers...
Author:
Patients Helping Patients
April 19, 2011

Turning yourself around in bed with a sheet

For several Pompe patients it can become difficult or impossible to turn around in bed independently. This also happened to me. When this problem started to appear in my life, I looked for a solution to make it easier for my caregiver to turn me around during the night when I am not at home. I found a tube...
Author:
Patients Helping Patients
April 19, 2011

Medical letter regarding Pompe disease and your treatment in case of traveling

In the Netherlands all Pompe patients receiving treatment with enzyme replacement therapy received a medical letter from their treatment centre. This medical letter can be taken with you e.g. on. holidays, travel, stay somewhere else in your country etc. In case of need or emergency this letter can be shown to a physician in other...
Author:
Patients Helping Patients
July 11, 2011

Medical ear ointment to treat nerve pain and wild tissue around G-tube

Luckily not all Pompe patients have to use G-tube feeding, but for those who have this information might be interesting. I received a PEG at June 1998 as my bodyweigtht decreased rapidly. The surgery went fine, but after surgery I experienced a lot of nerve pain around the PEG. My respiratory care nurse consulted an ENT...
Author: Maryze
Patients Helping Patients
August 16, 2011

Portable Bedside Handle

For several Pompe patients it can become difficult or impossible to turn around in bed without supportive equipment. At home one often has found a good solution, but what if one likes to go on holiday or need to travel for work? Then a hotel doesn’t offer you the supportive equipment you are used to. If...
Author:
Patients Helping Patients
December 18, 2012
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