My Risdiplam / Evrysdi Journey Day 13
ฝัง
- เผยแพร่เมื่อ 8 ก.ย. 2024
- Today’s video discuss my experience of Risdiplam (Evrysdi) as I approach two weeks of doses.
Risdiplam (Evrysdi) is an approved treatment for spinal muscular atrophy (SMA) in adults and children 2 months of age and older.
Risdiplam (Evrysdi) is a survival motor neuron-2 (SMN2) mRNA splicing modifier. A liquid medicine, it is administered daily by mouth or feeding tube and is the first and only medicine for SMA that can be taken at home. It works to increase and sustain functional survival motor neuron (SMN) protein levels in the central nervous system and peripheral tissues. SMN protein is found throughout the body and is critical for maintaining healthy motor neurons, responsible for transmitting movement signals from the brain to the muscles. People affected by SMA are dependent on the SMN2 gene to produce SMN protein, as they carry a mutation in chromosome 5q resulting in the SMN1 gene producing insufficient levels of functional SMN protein. Evidence shows that increasing the levels of SMN protein has significant clinical benefits for people living with a wide range of SMA types.
You can find more about SMA here
NHS
www.nhs.uk/con...
UK Charity
smauk.org.uk
Treatment Charity UK
www.treatsma.uk
Cure SMA (USA)
www.curesma.org
If you like my videos click that 👍🏻
If you’d like to know more about my experience or Risdiplam please comment in the box
If you have general comments please comment too
I’m happy to do other vlogs on SMA too
Please subscribe 🔔 for updates. / @thesmartchap Your support is appreciated.
Let’s connect
Instagram - my Risdiplam Journey / risdiplam_ross
Instagram - my smart accessible home / accessible_smart_home
Instagram - my daily life of food, football and fashion / accessible_smart_home
Recommended SMA gurus
Shane Burcaw / @squirmyandgrubs
Allie Williams / alliewilliams
LeMondre Pough / blupresstoday’s video discuss my experience of Risdiplam (Evrysdi) as I approach two weeks of doses.
Risdiplam (Evrysdi) is an approved treatment for spinal muscular atrophy (SMA) in adults and children 2 months of age and older.
Risdiplam (Evrysdi) is a survival motor neuron-2 (SMN2) mRNA splicing modifier. A liquid medicine, it is administered daily by mouth or feeding tube and is the first and only medicine for SMA that can be taken at home. It works to increase and sustain functional survival motor neuron (SMN) protein levels in the central nervous system and peripheral tissues. SMN protein is found throughout the body and is critical for maintaining healthy motor neurons, responsible for transmitting movement signals from the brain to the muscles. People affected by SMA are dependent on the SMN2 gene to produce SMN protein, as they carry a mutation in chromosome 5q resulting in the SMN1 gene producing insufficient levels of functional SMN protein. Evidence shows that increasing the levels of SMN protein has significant clinical benefits for people living with a wide range of SMA types.
You can find more about SMA here
NHS
www.nhs.uk/con...
UK Charity
smauk.org.uk
Treatment Charity UK
www.treatsma.uk
Cure SMA (USA)
www.curesma.org
If you like my videos click that 👍🏻
If you’d like to know more about my experience or Risdiplam please comment in the box
If you have general comments please comment too
I’m happy to do other vlogs on SMA too
Please subscribe 🔔 for updates. / @thesmartchap Your support is appreciated.
Let’s connect
Instagram - my Risdiplam Journey / risdiplam_ross
Instagram - my smart accessible home / accessible_smart_home
Instagram - my daily life of food, football and fashion / accessible_smart_home
Recommended SMA gurus
Shane Burcaw / @squirmyandgrubs
Allie Williams / alliewilliams
LeMondre Pough / blupress
#evrysdi #risdiplam #roche #smatype2
Really enjoying your trip, definitely the best I’ve seen on this subject. Good luck mate.
Thanks for the feedback
May I know is there a advisable time to take the Med? Morn, afternoon or evening ?
Sorry 😞 I missed this. I think morning is best.
May I know if there is a better time to administer the drug? Morn, afternoon or evening?
Hi. It’s entirely up to the individual but the guidance I had was in the morning after breakfast. As the drug has to be chilled I figured morning are better as I wouldn’t have to factor taking it with me if I was out for the day.
If possible then I want to know one things,
What is the improvement in your body with taking Risdiplam?
Because my 6 years old child also Suffering from SMA Type 2 copy 4
Hi. Thanks for comment. I’d watch all of my videos and you’ll see the incremental improvements. But I’ll do a new update soon.
@@thesmartchap
If you can give me any Advice and tips for child so it wil good for my child
Thanks
@@shahnawazalam7708 my day 28 video has some general life hacks