[ssbob]

Hi everybody out there, i am still searching for somebody to contact me who can share information about superficial siderosis which i have been diagnosed with. I am also unsure where to look for any possible response, can somebody out there help?

[njroux]

Originally Posted by ssbob

Hi everybody out there, i am still searching for somebody to contact me who can share information about superficial siderosis which i have been diagnosed with. I am also unsure where to look for any possible response, can somebody out there help?

Hi Bob I have been living with superficial siderosis for three years. I have done quite a bit of research, so please ask me anything. The one name that you will get to know is Prof. Michael Levy at Johns Hopkins. There are essentially two things you need to focus on. 1) find and if you can stop the bleed 2) remove the iron salts from you brain. I do not know the number, but many of us are on a drug called Ferriprox, it is no easy fix, but it does seem to slowly remove the iron. Let me know if you have specific questions. Hang in there Nick

[ssbob]

Originally Posted by njroux

Hi Bob I have been living with superficial siderosis for three years. I have done quite a bit of research, so please ask me anything. The one name that you will get to know is Prof. Michael Levy at Johns Hopkins. There are essentially two things you need to focus on. 1) find and if you can stop the bleed 2) remove the iron salts from you brain. I do not know the number, but many of us are on a drug called Ferriprox, it is no easy fix, but it does seem to slowly remove the iron. Let me know if you have specificuestions. Hang in there Nick

Hi Nick, do I write in this space? if so ,here goes. I think I understand this ss thing and have just been for scanning again.The iron shows clearly but is no different from the previous scans. You say you have been living with ss for three years, is that from discovery or from first appearance of symptoms? I do not seem to have any of the described symptoms yet and consider myself very fortunate. Nick, I am not sure if this is the way to communicate so I will cut this short . Please assist this computer-idiot, as I have some more questions. Bob

[ssbob]

Hi Nic, i did read your message. would like to hear from you again.
regards
Bob

[Liza Joubert]

Hi,

We live in Pretoria and my son has also been diagnosed with superifical siderosis. He had an accident in 2010, and has now gone downhill since May. Proffessor Louis Hoffmeyer diagnosied him, I have not been able to find out to much about it, but he did give me an article which is relevant to Stevens' condition.

If you send me an email address I can forward it to you.

He has had a few good days but today is a bad day again, no balance, nausea etc.

We were warned that his hearing is going to deteriorate but no one can say how quickly. He is now talking louder and louder and is often like a hyperactive puppy, following me everywhere and repeating everything he has already said.

It gets upsetting to me to see it and if I tell him he is repeating himself he gets cross.

But at least he is still with us, all things considered.

Speak to you again,

Regards
Liza Joubert