Saturday morning may have begun at our local community urgent care but it soon turned into a run to the emergency room 65 miles further down the road. Bless my daughter for driving the second leg because the past three… Read More... "Living With Superficial Siderosis"
Author: Rori Daniel
Metabolic stress is not a friend to the very young, elderly, or those who’ve been dealing with superficial siderosis for awhile. If you’re healthy, enjoy a great immune system, exercise body and mind you easily bounce back after an infection… Read More... "Living With A Compromised Neurological Reserve"
I wrote an earlier piece on livingwithss.com detailing Gary’s intermittent swallowing problem. The Danger Of Dysphagia outlines some serious risks you may face if you choke while eating or drinking. Gary has been evaluated on a regular basis since that… Read More... "Small Victories"
Radio Silence 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 harvest, and chicken season. Did I mention all the new doctors? Trips to… Read More... "Radio Silence"
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… Read More... "Patience"
The Ripple Effect Of Chronic Illness Most of us will never plan on becoming full-time caregivers. However, some will tackle this role with laser focus. There are no second thoughts or questions. Someone we love, a spouse, parent, or child,… Read More... "The Ripple Effect Of Chronic Illness"
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… Read More... "The Pathway To Healing"
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… Read More... "Making Our Voice Heard"
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… Read More... "Rare Disease Week 2019 on Capitol Hill"
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? Read More... "Your Daily Medications"
Touching The Positives I recently came across an interesting question, If you were cured today, what would you do? For people with a chronic condition or rare disorder, that’s a loaded question. What would you do just for yourself, for family… Read More... "Touching The Positives"
The Patient Experience With The Neurology Ride A visit to Gary’s neurologist often brings to mind when you step up to ride the tallest, most twisty ride in an amusement park. Your ride begins by slowly inching along, anticipating a… Read More... "Surviving The Neurology Ride"
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… Read More... "Six Steps To Becoming A Better Friend"
You move your eyes more often than your heart beats. Vision problems are one of the mysterious, unexplained symptoms people are plagued with long before their doctor knows what is wrong. While not as frequent as sensorineural hearing loss or… Read More... "Neurodegenerative Vision Problems"
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… Read More... "When Small Details Equal Giant Victories"
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… Read More... "Countdown To The Last MRI"