SAFO

[Guest guest]

Merrell,

You might want to look in our Files for our SAFO Folder. There

are several pieces of information there. One study was done on a range

of people, I think it only included 40% of CMT persons, or something

like that. Check it out.

Again, we are all different and have different needs. What works for

one may not work for another one.

~ Gretchen

[Guest guest]

Hi JoAnn,

The SAFO is made by a company in England called Dorset. I worked with an

Orthodic provider here in Northern California who took casts of my legs and

send them over to have the braces made. They are made from soft silicone

material that is matched to your skin color. It feels like walking on gel. They

are the thickness of wearing 2 heavy socks.

The website is:

_http://www.safo.eu.com/en/index.html_ (http://www.safo.eu.com/en/index.html)

There are two styles: one with the velcro straps on the outside (that is the

link that you had) and one on the inside that are hidden from view. I have the

hidden velcro style. The next time I get them, I will probably get the outside

strap though because they stay closed in water and the hidden ones don't, so I

have had to use a velcro sleeve (over the counter wrist supports from Longs) to

put around them to wear them in the water for swimming and aquasize. I do wear

supportive aqua shoes (Ryka makes a great product), so they are protected from

getting cut or scratched up. I was able to wear fins with them when I went

snorkling too.

I do get some support for my balance because of the ridgid bracing of my ankle,

but it is not as much support as a traditional AFO provides. I am using my calf

muscles more to walk and so the fatigue factor is greater than the standard

AFO, but my muscles are getting more exercise and thus hopefully atropying

slower. They can build in arch support if needed, but you need to request it and

I didn't know to do that so the bottoms of mine are soft. I have ended up going

to Good Feet to get a set of 3 arch support orthodics that I use

in my shoes and that works fine, but it was an additional cost of $500.

The SAFO is expensive: $6,000 for the pair. I did get $2000 from MDA and my

insurance, Kaiser, covered $1,400, so that reduced it by more than half.

I know that on the website, it mentions that they are hot because they do not

breathe. I have not had a problem wearing them 14 hours a day, 7 days a week,

and through all four seasons in northern California, which is pretty mild

weather. My feet have never been uncomfortable because of the heat. If fact,I

have enjoyed the added insulation because I have poor circulation and my feet

are usually cold. When I take them off at the end of the day, they are sweaty

and I wash them out with soap in the sink. In the morning, I put powder on them

to be able to slip them easily on my feet.

Yes, the voice activated software is for my computer.

If I can answer any more questions, please let me know.

Maureen

[Guest guest]

Hi Maureen,

I want to ask about SAFO.

My name is Leena. Having CMT for last 32 yrs. I am using AFO.I read about SAFO.

My son 6 yrs old also has CMT. I live in India.SAFO are not available here.Are

they realily useful for correcting foot drop?How comfortable is walking with

them? I am planning to order them from UK.

-Leena.

[Guest guest]

Hi Leena,

The SAFOs do correct mild to moderate foot drop, not severe though. They are

extremely comfortable. It feels like walking on gel.

Maureen

[Guest guest]

Hi ,

I am happy to hear the SAFO has worked so well for you. I had looked into this

brace a couple of years ago when I needed a new AFO and I was told that the SAFO

works well if the foot drop is not too severe and atrophy of leg muscles is not

advanced (which unfortunately would eliminate me).

The orthotist who made my brace here in Canada would not recommend the SAFO for

me. She has worked with Dorset and has made the SAFO for a client with CMT, who

did not have the results she hoped for.

Were you fitted in the US or did you travel to England? It is always

encouraging to hear when someone finds a solution. I hope it continues well for

you...Good Luck!

Warm wishes,