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…

Read more →

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…

Read more →

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…

Read more →

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…

Read more →

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…

Read more →

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…

Read more →

The Common Thread Searching For The Unexplained

common thread

Diagnosis of superficial siderosis is rare. It’s so unique in fact if you searched for information on one of the national or international rare disease databases until the last few years it wasn’t listed.  We should be glad so few will face a diagnosis of superficial siderosis, but you can’t help but wonder. Is there a common thread to…

Read more →

Time to Rare Up

rdd-logo

Every February individuals, patient organizations, NIH, medical researchers, hospitals and schools, universities and pharmaceutical companies representing over 7000 rare diseases join forces to raise awareness. The movement began in Europe in 2008 thanks to EURORDIS with 65 countries now adding their voices.  The theme for Rare Disease Day 2018  is RESEARCH You may be wondering what you can do…

Read more →

A New Chapter For 2018

Honestly, I’m glad to see the back of 2017 Have you ever felt like the proverbial herd of turtles trying to run through peanut butter? Gary’s health gave our family a few frightening moments the first half of 2017. Reality hits when you’re waiting alone in an ER, 200 miles from home. One step forward five steps back, so we’re ready…

Read more →

Welcome Accessibility

sight impaired

If you’re a return visitor to our website, you may have noticed the crazy color and layout changes that have been happening multiple times a day.   Gary’s eyesight has made reading more difficult not only here, but on a lot of online sites he likes to visit. Web accessibility is vital to people with disabilities, so we felt…

Read more →

Thread of Depression

depression

Have you ever wondered which is the most frequent and sometimes incapacitating superficial siderosis symptom? Sensorineural hearing loss, ataxia, and myelopathy are all life-changing, but the single most shared symptom members of our superficial siderosis community battle is depression. Not everyone will fall head first into a pit of despair, but the fight for your health wears down even the…

Read more →

Staying Woke

You are not alone

  I like listening (ok, eavesdropping) to my granddaughters when they find time to get together. Our grandchildren range in age from a college student, high school, elementary to toddler. Conversations can be eye-opening. You learn a lot: who’s salty, why something’s lit, and being woke. If you follow social media, you see it everywhere. This word stays with…

Read more →