Potocki-Lupski Syndrome PTLS - Living with Potocki Lupski Syndrome (PTLS)

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Potocki-Lupski Syndrome(PTLS) Foundation

Potocki-Lupski Syndrome(PTLS) Foundation

10 жыл бұрын

Christian, A young man with PTLS, answers questions about having this rare chromosome duplication (dup 17p11.2) Potocki-Lupski Syndrome (PTLS)
Sindrom de Potocki Lupski

Пікірлер: 11
@ahmadolabisiamal3484
@ahmadolabisiamal3484 6 ай бұрын
well done to you. i am a medical student and i was studying PLS when i came across this. you are doing amazing. also i give great accolades to your mum who was patient with you and has made you into a beautiful person.
@PTLSfoundation
@PTLSfoundation 6 ай бұрын
Thank you so much! We are happy to talk with you more. Julie@ptlsfoundation.org
@BlackF35
@BlackF35 2 жыл бұрын
Chris we love you! Your italian family Roberta, Dave and Little Vicky
@jorgebotero5874
@jorgebotero5874 6 жыл бұрын
Well done, thanks for this helpful comments. You are a brave guy
@PTLSfoundation
@PTLSfoundation 6 жыл бұрын
Thank you very much, Jorge. Life is happy and full of potential!
@reflectionsinthebible3579
@reflectionsinthebible3579 6 жыл бұрын
goos speaker :) well done :) p.s. I do not have ptsd, but as a kid I sure had some anxiety as a kid and I still do sometimes but I have mastered it. :) Do you have a hard time with weight? did you have a hard with weight as a baby and child? how do you keep your weight up?
@PTLSfoundation
@PTLSfoundation 6 жыл бұрын
As a baby, they do not put on weight, even when they eat. They will add weight as they get older. Some of the teens and adults have trouble with too much weight, and others remain skinny.
@shaileshshah2202
@shaileshshah2202 5 жыл бұрын
hi i m shailesh shah from india. my daughter has a protoki lupski syndrome is there any cure of these ?
@shaileshshah2202
@shaileshshah2202 5 жыл бұрын
my number is 94288 41668
@PTLSawareness
@PTLSawareness 5 жыл бұрын
Thank you for reaching out. This disorder does not have a "cure", however, the children, teens and adults have great potential in life.
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