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Chantell Venter replied to the topic What are your Thoughts on Evrysdi (risdiplam)? in the forum Roche and Genentech- Evrysdi (risdiplam) 6 months, 3 weeks ago
I realize that the research costs a lot of money but the price of Evrysdi is going to make it really difficult for many to afford this breakthrough treatment.
I stay in South Africa and except that it is not available here yet I would never be able to afford it.
Currently in South Africa our medical aid companies see SMA as ‘another genetic…[Read more]
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Chantell Venter changed their profile picture 9 months, 1 week ago
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Chantell Venter replied to the topic Problems Breathing With a Face Mask in the forum Coronavirus (COVID-19) and SMA 9 months, 1 week ago
Maybe you should try a face shield instead of the mask and see how it goes.
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Chantell Venter replied to the topic Sitting Unassisted During Physical Therapy in the forum Adults With SMA 2 years ago
I also use a collar in the pool at my PT. He has me sit on the bench in front of the inflow of the pool to practice my balance. When this gets too easy he moves the water around me to make it a bit tougher.
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Chantell Venter replied to the topic Cure SMA Launches New Support Program for Teens and Adults with SMA in the forum SMA Assistive Technology/Equipment 2 years, 3 months ago
I am not aware of any Organizations in South Africa that would do something like this.
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Chantell Venter replied to the topic Cure SMA Launches New Support Program for Teens and Adults with SMA in the forum SMA Assistive Technology/Equipment 2 years, 3 months ago
Looks like a great package. Unfortunately only available in US. Nothing like this available in South Africa.
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Chantell Venter replied to the topic Flu Vaccine – Yes, No or On the Fence? in the forum Adults With SMA 2 years, 4 months ago
I have also had the flu vaccine for the past 3 years. The first time I had the flu vaccine I also had a pneumonia vaccine which lasts for 5 years. This combination was recommended by my doctor and it seems to work for me.
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Chantell Venter replied to the topic Shifting Positions in Bed in the forum Adults With SMA 2 years, 7 months ago
I sleep on a large towel (bath sheet) which my caregiver pulls to turn me. It works the same way as the draw sheet used in hospitals. It is just important to straighten it properly after each turn to prevent pressure points.
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Chantell Venter replied to the topic Therapies in Conjunction with Spinraza in the forum Spinraza 2 years, 8 months ago
At home I use a patient lifter with a sling. My dad made me an adaption that attaches to the hoist at the pool so I can use the same sling to get in and out of the pool. The hoist uses a hydrolic mechanism that my physio operates. Works very easy and comfortable for us.
Mike my parents, especially my dad, is very protective of me. Even though I…[Read more]
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Chantell Venter replied to the topic Therapies in Conjunction with Spinraza in the forum Spinraza 2 years, 8 months ago
I also enjoy aquatherapy on a weekly basis. Now that it is winter in South Africa it is on the back burner for the moment. Although the pool is heated and indoors the change rooms are not accessible so I cover up well and dress once back home. Winter weather does nt allow for this. Can’t wait for warmer weather. Not only do I get the exercise and…[Read more]
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Adnan Hafizovic and
Chantell Venter are now friends 2 years, 8 months ago
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Chantell Venter posted a new activity comment 2 years, 9 months ago
Hi Kevin,
Thanks for the warm welcome.
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Kevin Schaefer and
Chantell Venter are now friends 2 years, 9 months ago
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Chantell Venter changed their profile picture 2 years, 9 months ago
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Chantell Venter became a registered member 2 years, 9 months ago
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Hi Chantell, welcome! I’m Kevin Schaefer, one of the forum moderators and a columnist/staff member here at BioNews Services.
Please let me know if you have any questions. We want this to be a platform for SMA patients, caregivers and medical professionals to connect and share experiences. Thanks for joining us!
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Hi Kevin,
Thanks for the warm welcome.
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Absolutely.
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