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we're really grateful that the expert based at Massachusetts General has been working with us since 2015, and we've built up quite an archive over the past few years. With a little sifting you should find the answer you're looking for. However, we know we haven't covered everything, so if there's something else you need to know, please contact us - we'd be happy to forward your question. It's part of what we do.
These answers relate to hearing with regard to Superficial Siderosis and its associated symptoms. If you're looking for something specific, please use your internet browser's page search facility (usually in the top right hand corner of your screen) to search particular keywords or alternatively, browse down the page to learn more about how Superficial Siderosis can affect everyday life and what can be done to help. If you'd like to broaden your search, you may find what you're looking for on another part of the Silent Bleed site - please use the search box in the header above.
Blood brain barrier question
Question:
Answer:
High frequency hearing loss is the pattern of hearing loss for both age related hearing loss and superficial siderosis. They look the same to an audiologist. But age related hearing loss at 55 years is a little young unless you have a family history of hearing loss. If you balance problems too, then the most likely explanation is that the superficial siderosis is causing damage.
Question:
Answer:
You might be exacerbating your bleeding by exercising. Most people with SS have bleeding coming from the spinal column, usually from the lining between the spinal
 cord and the vertebral bones. The lining may be prone to bleed when doing certain activities. If you find that your headaches and lightheadedness occur within 24 hours of a certain activity, don’t do that activity anymore. Alternatively, try to isolate where the bleeding is occurring and investigate possible fixes (blood patch, gluing, surgery).
Question:
Answer:
You are doing the right thing by connecting with the Silent Bleed and learning about superficial siderosis. It sounds like your doctor is interested in your case and has a plan for you. If he would like, he can reach out to me for advice (email: mlevy11@mgh.harvard.edu)
SS Headaches
Question:
Answer:
Ferriprox gets into the brain very readily. Within a few minutes of ingestion, Ferriprox is already detectable in the brain. Access to the brain is not an issue. (Injecting directly into the brain won’t help.)
Ferriprox is a very simple molecule that just binds iron. When iron binds ferritin and forms hemosiderosis in the spinal fluid, the product is insoluble and remains trapped outside of the circulation. When Ferriprox binds iron, it remains soluble and returns the iron to your circulation.
You can’t direct Ferriprox to bind bad iron only. That is a worthy goal for us researchers!!
Life expectancy question
Question:
Hi there I'm messaging from Sheffield, UK on behalf of my dad. He's 73 and been diagnosed with SS around 2000. He's in the advance stages with total hearing loss, nystagmus, loss of bladder and bowel control and in a wheelchair as he can no longer walk. I've heard about Ferriprox and wondered if it can be used in the advanced stages of SS. I've never heard his consultant mention this drug.
Answer:
Ferriprox is approved in the UK and should be accessible. There is no other iron chelator that gets in the brain so it's the only option for treatment at this time. No telling if your dad could see the benefit of Ferriprox since it will take several years to remove the iron.
Question:
Hi there I'm messaging from Sheffield, UK on behalf of my dad. He's 73 and been diagnosed with SS around 2000. He's in the advance stages with total hearing loss, nystagmus, loss of bladder and bowel control and in a wheelchair as he can no longer walk. I've heard about Ferriprox and wondered if it can be used in the advanced stages of SS. I've never heard his consultant mention this drug.
Answer:
Ferriprox is approved in the UK and should be accessible. There is no other iron chelator that gets in the brain so it's the only option for treatment at this time. No telling if your dad could see the benefit of Ferriprox since it will take several years to remove the iron.
Question:
Hi there I'm messaging from Sheffield, UK on behalf of my dad. He's 73 and been diagnosed with SS around 2000. He's in the advance stages with total hearing loss, nystagmus, loss of bladder and bowel control and in a wheelchair as he can no longer walk. I've heard about Ferriprox and wondered if it can be used in the advanced stages of SS. I've never heard his consultant mention this drug.
Answer:
Ferriprox is approved in the UK and should be accessible. There is no other iron chelator that gets in the brain so it's the only option for treatment at this time. No telling if your dad could see the benefit of Ferriprox since it will take several years to remove the iron.
Question:
Hi there I'm messaging from Sheffield, UK on behalf of my dad. He's 73 and been diagnosed with SS around 2000. He's in the advance stages with total hearing loss, nystagmus, loss of bladder and bowel control and in a wheelchair as he can no longer walk. I've heard about Ferriprox and wondered if it can be used in the advanced stages of SS. I've never heard his consultant mention this drug.
Answer:
Ferriprox is approved in the UK and should be accessible. There is no other iron chelator that gets in the brain so it's the only option for treatment at this time. No telling if your dad could see the benefit of Ferriprox since it will take several years to remove the iron.
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