Amanda Profile

Spotlight Profile: Amanda Fearn-Banfield

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Amanda Fearn-Banfield is a creative wordsmith. This wonderful British fireball is not only the behind-the-scenes force responsible for navigating The Silent Bleed Superficial Siderosis Charity through the complexities of the UK but also keeps the charity website, www.thesilentbleed.co.uk fresh with the latest information.

amanda silent bleed website

If you visit the Silent Bleed website you will find they offer an online donation opportunity. They will happily accept one-time donations or if you are generously inclined you may now schedule a regular monthly gift. https:/www.thesilentbleed.co.uk/donate

donate

Amanda, tell everyone about your background.

I’m currently a freelance copywriter – so that’s words for websites, brochures and even beermats and bag labels in the past. I work with startups and large companies – the agency I work with has just landed a contract to rebrand a city, which should be interesting. I spent years working in office management, which helps with the practical side of running the charity.

How would you describe your role at the Silent Bleed?

I’m one of the founders and I’m a trustee. I do as much research and writing as time allows – I also have a family to care for. Most of my charity time these days is taken up with making sure we’re compliant with the UK Charities Commission and keeping the website up to date.

What inspired you to help set up the charity?

When my fellow trustee and founder, Jason Roberts, was first diagnosed, there was very little information about superficial siderosis out there. Thankfully, blogger Dave Hill had started the ball rolling with his site but I needed to find out more about treatment options and where to go next. It was Jason’s idea to start the charity so that no-one had to feel that alone again.

What does the Silent Bleed Superficial Siderosis charity do?

I see our role as a hub. Becoming a registered charity involved hours of work preparing lengthy documents but that was back in 2016 and now things are moving along really well. 

We’re hoping to expand our grant-making scope this year as until now, most of the money we’ve raised has gone to Dr. Levy at Johns Hopkins for research. Because the way we operate is tightly regulated by the UK Government, I think it provides reassurance that we’ll handle other people’s kind donations with care and respect.

Our website is also home to Dr. Levy’s Q&A. With a condition as rare as superficial siderosis, experts are hard to come by, so by providing this service, people can pose questions, we send them off and Dr Levy replies. It’s a well valued resource, I think.

We have a small but dedicated support team for carers, family and friends of those with superficial siderosis as well. Janice Toovey, who has a son with the condition, has been running support on our Facebook page for a while now. Helping countless people through a very difficult time. I’ve met her and her son a few times now, they’re lovely people.

What’s it like working with Jason Roberts?

Exhausting. I can’t keep up with his ideas – but he does make a good coffee and he’s always got a packet of jaffa cakes to hand. He’s a professional fitness instructor so he’s helped me no end with my outdoor pursuits.

What’s your vision for the future?

A cure, obviously, but also more research into the cause – why some people with a spinal/cerebral bleed develop superficial siderosis but the majority don’t. We met with Dr Levy and Prof. Werring at Queens Square a couple of years ago and would like to think that there will be greater collaboration in the future.

For now, we’re looking to up our game with fundraising and awareness. We publish a leaflet and of course, there’s the website but we’re hoping to reach out more with social media in the coming year. We’re also looking for new and innovative ways to fundraise as well as getting more people on board to help. We’re a small team with big dreams.

Apart from the Silent Bleed charity and your writing career, what other interests keep you happy?

I’m an avid plus-size runner, cyclist, rambler and blogger. I love being outside, which is just as well because I have an allotment*, which keeps me busy. Once a year I go away to a retreat in the Dordogne to write my novel about love, loss and peaches – my aim is to finish it this year.

queen of small things blog

I have two children, who take up much of my time and I go home to my family in Cornwall, where I grew up, as often as I can. My husband and I are film buffs but with so much going on, we don’t get to go to the cinema very often these days!

*Note for our US readers, an allotment is a vegetable/flower space British city dwellers can apply for to keep a connection with a garden.

Amanda Fearn-Banfield is a freelance writer, sensory tourist, runner, gardener, and budding novelist. She and her husband enjoy life with their children, family and friends. You can follow Amanda’s wonderfully entertaining blog, http://www.queenofsmallthings.co.uk or find her on instagram @queenofsmallthings

Contact Amanda at https://www.thesilentbleed.co.uk 

3 Replies to “Spotlight Profile: Amanda Fearn-Banfield”

  1. Linda Young

    Well, I feel lucky that my SS has not reached the point where you are. It is troublesome but so far I cope. I am so glad I found Dr. Levy. Two neurologists said I didn’t have SS even though it showed up on two separate MRI’s. After a third MRI ordered by Dr. Levy Superficial Hemosiderosis was confirmed. I was relieved that I finally found a doctor that was an expert on the condition. I am not on medication because of the cost so I just adjust my life as I go along.

  2. James W. Henning

    Thank you, Amanda.My name is Jim Henning. I live in Stewart Manor, NY. I am a 43 year – old patient of Dr. Levy’s. I was disgnosed with Superficial Siderosis in the spring of 2016. My balance and hearing were depreciating at such a rapid rate that my neurologists and brain surgeon were both alarmed. My neuro – oncologist gave me a lumbar puncture which determined a high amount of protuen and also an unusual amount of iron. After showing my MRI to the tumor board at North Shore Hospital in Long Island, I was diagnosed with Superficial Siderosis.
    When i was eleven years old, i had my first brain tumor removal of a juvenile astrocytoma in my cerebellum. I also had a large “build up” of hydrocephalus so my brain surgeon was going to insert a shunt to fegulate my brain fluid. He decided that a shunt insertion was not necessary at this time but i contracted spinal meningitis. I had two spinal taps a day until my fever was controlled. My recovery was incredibly slow . I had to re – learn how to walk, talk and see.
    Instead og physical therapy, my beain surgeon recommended swimming for my to stengthen all the muscles in my neck and vertabrae. Hearing this was a welcome addition becasue i was a competitive, age group swimmer who had won many races in a short period. The first time i went into the swim pool, i nearly drowned and became totally disorientated. I worked real hard everyday and became a National swimmer. I never thought about it until years later but maybe thr teason i enjoyed auccess in the swim pool was because i necer had to worry about my balance?
    Fourteen years passed and i was disgnosed with a grade II astrocytoma in my cerebellum. One month later, becasue of the hydrocephalus build – up, i had a codman shunt inserted into my brain. 6 months later, my shunt malfunctioned, so i had surgery to replace it with a programmable shunt. By my later twenties and early thirties, i was noticing rapid hearing decline and gradual balance depreciation. After countless consults with my neurologists and also hearing specialists, i was fitted with hearing aides. The “tinnitus” in my ears was (and is) incredible. My neurologists thought that these conditions were byprodicts of my cerebellur surgeries. For many years, this is exactly what i thought, too., until my symptoms became much worse. After firther MRI testing revealed another tumor which was gradually growing and the Lumbar Puncture showed thr iron build – up in my spine, i had an SRS stereotactic surgery to shrink the tumor. Then i went to Johns Hopkins so Dr. Levy could read my MRI anf comfirm my diagnosis.
    Dr. Levy , based on MRI scans, did confirm that i am suffering from Superficial Siderosis. He prescribed Ferriprox, two 500 mg tablets twice per day, as treatment. My neurological fuctioning is slowly depreciating and i have not seen any improvement but, from what he says, i guess that can be expected. I am mattied and have three lovely children. I work each day and am successful in pharmaceutical sales.

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