Is It Time To Visit A Neuropyschologist?

Neuropsychologist

Your brain is a complex system that controls your body, guides your thinking, and filters emotional response. When something like superficial siderosis damages neural function questions arise on how exactly a person’s thoughts, feelings, and cognitive function will be affected. If you or those close to you notice changes in memory, thinking or behavior it may be time to…

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Meet Dr. Michael levy

meet dr. michael Levy

The Superficial Siderosis Research Alliance is pleased to announce Michael Levy MD, PhD as the SSRA Board Chief Medical Advisor. Dr. Levy, is a neurologist with 10 years of clinical and research expertise in rare neuroimmunological disorders.This Houston, Texas native earned his medical degree from Baylor College of Medicine. He then completed his residency in the Johns Hopkins neurology…

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Radio Silence

Taking a break

You may have noticed the silence of late. Life becomes busy and complicated. Sometimes you need to step back for a minute. Social media, vegetable, and chicken season. Did I mention all the new doctors? Trips to the emergency room, ultrasounds, CT scans, x-rays, and biopsies. Radio silence. Taking a breath from the chaos It began innocently. We live…

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Patience

Patience

If there is a single lesson our superficial siderosis community should be annoyingly familiar with, forward progress never happens overnight. We always seem to be waiting -appointments, test results, news. Whoever decided patience is a virtue should step forward and explain themselves. Playing The Waiting Game A few weeks ago we introduced the Superficial Siderosis Research Tissue project. While…

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The Ripple Effect Of Chronic Illness

caregivers

The role of becoming a caregiver will alter your life. Most in our group tackle this task with laser focus. There are no second thoughts or questions. Someone we love- spouse, parent, or child is depending on us and we will not fail them. We become the advocates for their healthcare, educating doctors about their rare disease or chronic…

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The Pathway To Healing

Our healing pathway

What if research could identify a way to give your body a fighting chance? Kick-start the path to healing? Ataxia, sensorineural hearing loss, and myelopathy; These are the real enemies you confront because of superficial siderosis. Yes, free iron wreaks havoc, but this mix of symptoms will rob you of your independence and your wellbeing. The damage at the…

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Making Our Voice Heard

rare disease week capitol hill

Superficial siderosis is an ultra-rare condition with a small patient population. Our community knows all too well how difficult the journey to a diagnosis and then care. Too often hope dwindles leaving you to wonder how we can make our voice heard when our numbers are so small? A disease is classified as rare in the United States if…

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Rare Disease Week 2019 on Capitol Hill

Rare Disease Week

Living with Superficial Siderosis will be heading to Capitol Hill in Washington DC this weekend to join with fellow rare disease advocates, patients, and caregivers from across the country. Representatives from all fifty states will gather to share experiences, tell their stories and discuss with our legislatures how important we as a community count on their much-needed support for…

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Your Daily Medications

Memory loss

Imagine living a life that revolves around medication. I know many of you can relate. Try keeping track of 200 pills a week with nine different daily dosage times. What time is it? Did I take my pills? Did I forget my medicine? What’s next when memory becomes such a problem your reminder strategies begin to fail?

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Spotlight Profile: Amanda Fearn-Banfield

Amanda Profile

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. If you visit the Silent Bleed website you will find they offer an online donation opportunity….

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Touching The Positives

chronic illness life

I recently came across an interesting question, If you were cured today, what would you do? For people with a chronic condition or rare disease that’s a loaded question. What would you do just for yourself, for family or friends? Would you run out to experience a long-time dream? Visit far off places? Make more friends? Host a party? Meet…

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Surviving The Neurology Ride

surviving neurology

A visit to the neurologist often reminds me of stepping up to ride the tallest most twisty ride in the park. You start off slowly inching along, anticipating a thrilling experience with just a hint of fear. Then the bottom falls away and down you go. Sometimes the ride is exciting, everything you expected. Often the anticipation and hype…

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Our Superficial Siderosis Community: Meet Fiona Parkinson

súper siderosis community members

Fiona Parkinson has a busy life. This active 45-year-old Australian juggles her duties of tending her family’s small hobby farm, animal menagerie, preserving award-winning homegrown food, and mothering three handsome young men. Fiona is also battling Superficial Siderosis. I first noticed signs in April of 2015. It came on suddenly after getting tonsillitis. I was suddenly dizzy and off…

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Six Steps To Becoming A Better Friend

friends

We all learned how to be a friend early on but for those of us who know someone fighting a rare disease or chronic illness, it takes some understanding along with a little effort to become a better friend. The challenges faced by the chronically ill are a daily part of life. You may know what you need but the…

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Superficial Siderosis Standard Of Care

Plea for standard of care

In the United States, there is usually a national standard of care for a particular diagnosis. A documented clinical guideline for your physician to follow. No matter where you live geographically, your physician should have access to a standard treatment protocol. Physician education and a worldwide Standard of Care policy are two topics we as advocates need to push. Medical students…

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When Small Details Equal Giant Victories

Superficial Siderosis Granted Compassionate Allowance Status The Superficial Siderosis community received validation this week as their status as rare disease sufferers’ was officially recognized by the U.S. Social Security Administration. On August 20, 2018, the U.S. Department of Social Security released a press release outlining their expansion of the compassionate allowance list of severe and incapacitating diseases that qualify U.S. residents fast-tracking SSI…

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Countdown To The Last MRI

Our Chelation Journey

Our Chelation Journey This past week has seemed like a bad episode of Mission Impossible. We found ourselves desperately racing the clock trying to schedule what might be Gary’s last MRI of his brain. Strangely enough, this month marks the four year anniversary of his journey into chelation. If you remember from Summertime Neurology Blues during our trip to…

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The Question Of Restless Leg Syndrome

Restless Leg Questions

  Restless Leg Syndrome (RLS) has become an interesting discussion topic in Superficial Siderosis circles so my question: Is there a connection between SS and RLS? Or does the fact RLS affects 8% of the population¹ suggest it’s simple law-of-averages accounting for so many people now reporting problems? What is RLS? Restless legs syndrome (RLS) is a neurological disorder…

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Camping with a Chronic Illness

Chronic Illness trip

No, I’m sorry we can’t.  It’s become our standard answer to most invitations now. Our niece sent a text last month. Hey, we’re going skydiving do you guys want to come? I was so shocked I asked if she meant to send the invitation to someone else. Mistake or not it brings home the reality of living life with a…

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