Chantell Venter

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]

Maybe you should try a face shield instead of the mask and see how it goes.

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.

I am not aware of any Organizations in South Africa that would do something like this.

Looks like a great package. Unfortunately only available in US. Nothing like this available in South Africa.

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.

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.

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]

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]