"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…"
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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…"
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."
Ashok Sangwan posted a discussionAnybody 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
Swati joined Roxanne's group
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
ahmed Sayed Abdel Gawad posted a discussionentering 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
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…"
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."
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 1 Favorite
entering the toilet
Started by ahmed Sayed Abdel Gawad in Research. Last reply by Melissa Chamness on Wednesday. 1 Reply 0 Favorites
Anybody with a large deletion?
Started by Ashok Sangwan in General Discussion. Last reply by Rahul Deshpande Feb 6. 1 Reply 0 Favorites
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 0 Favorites
Exon 44 n 45 deletion
Started by Shelly in Research Nov 20, 2018. 0 Replies 0 Favorites
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Featured Blog
PPMD Designates UC Davis a Certified Duchenne Care Center
Posted by PPMD on April 6, 2017 at 12:30pm 0 Comments 0 Favorites
Today Parent Project Muscular Dystrophy (PPMD) named UC Davis Department of Physical Medicine and Rehabilitation Neuromuscular Disease Clinic (UC…
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