Welcome to the PPMD Community.

Getting started is easy. Just click one of the icons below.


Read Blogs

Join Groups

View Discussions

Attend Events

Latest Activity

Melissa Chamness replied to Claire Diemler's discussion How did you talk to your son about DMD?
"Our sons are both 15 and they are at different stages of how they perceive why they are living unlike other kids.  We have always played it "by ear," as they say or on a need to know basis keeping explanations simple when…"
Wednesday
Melissa Chamness replied to ahmed Sayed Abdel Gawad's discussion entering the toilet
"Hi, Our boys are 15, both with genetically  confirmed Duchennes.  When they were in grade school we requested each of them to have a para-professional assigned to them for assisting with school work and toileting.  When they became…"
Wednesday
Rahul Deshpande replied to Ashok Sangwan's discussion Anybody with a large deletion?
"Some parents are trying Tamoxifen for their children. There is a group in fb where you can find more details from people who are trying Tamoxifen. Are you giving Steroids. If not then that could be an option to consider."
Feb 6
Nick Ware is now a member of PPMD Community
Feb 6
Ashok Sangwan posted a discussion

Anybody with a large deletion?

Hi,My son was diagnosed with duchenne at the age of 1.5 years. He has very large deletion(2-44). He is currently 7 years of age and on power chair, he stopped walking at the age of 51/2 years. He is not able to use his upper body as well, meaning he cannot lift his hands at all. Anyone else with such large deletion and having similar issues with upper body?I wanted to know if there is anything specific that can be done in such scenario to ease our son`s life?Any trial he can participate?We are…See More
Jan 30
Brenda Higginbotham is now a member of PPMD Community
Jan 23
Profile IconVachatsakis Michail and Ronald Sutherland joined PPMD Community
Jan 14
Tammy Burke, RN, BSN is now a member of PPMD Community
Jan 3
Swati joined Roxanne's group
Thumbnail

Outliers - Intermediate between Duchenne & Becker MD

The reading frame rule holds true 90% of the time. There remains those 10% that does not fit dmd/bmd phenotype. There is a 3rd form that may be considered as an intermediate between Duchenne and Becker MD(mild DMD or severe BMD.See More
Dec 10, 2018
ahmed Sayed Abdel Gawad posted a discussion

entering the toilet

greetingsmy son now suffers when he wants to go to the toilet when he is in school. is there any ideas about facilitating this issue for him please. forexample does the electric standing wheel chair would help in such situations.thanks and best regardsSee More
Dec 10, 2018
Profile IconAlexander Liska, Swati and Enzo Figueres joined PPMD Community
Dec 10, 2018
Sue Driscoll is now a member of PPMD Community
Dec 3, 2018
Enzo Figueres favorited Sarah Kasner's discussion Birthdays and Duchenne
Dec 2, 2018
Ashley Schea replied to ahmed Sayed Abdel Gawad's discussion foldable elecrtic wheel chair
"We went with the EZ Lite Cruiser for our 8 year old.  We had to modify it because he is a little small for it but would be perfect for a 12 year old.  It's about 60 pounds and can be folded up and put in…"
Nov 28, 2018
Satish Yadav commented on Bains's group India
"Hello, I consulted with Dr. regarding stemcell. She said its not for this disease. There are so many fake or we can say cheaters in market. Please be aware of it."
Nov 27, 2018
Satish Yadav joined Bains's group
Thumbnail

India

For folks to share information about any research happening in India for Duchenne.
Nov 27, 2018

Discussions

How did you talk to your son about DMD?

Started by Claire Diemler in General Discussion. Last reply by Melissa Chamness on Wednesday. 5 Replies

entering the toilet

Started by ahmed Sayed Abdel Gawad in Research. Last reply by Melissa Chamness on Wednesday. 1 Reply

Anybody with a large deletion?

Started by Ashok Sangwan in General Discussion. Last reply by Rahul Deshpande Feb 6. 1 Reply

foldable elecrtic wheel chair

Started by ahmed Sayed Abdel Gawad in Accessibility and Disability Issues. Last reply by Ashley Schea Nov 28, 2018. 2 Replies

Exon 44 n 45 deletion

Started by Shelly in Research Nov 20, 2018. 0 Replies

Photos

  • Add Photos
  • View All
 
 
 

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service