Information on how you can navigate through treatments, therapies, doctors and life with superficial siderosis
The Role of Hemosiderin Hemosiderin is an iron-storage protein that forms when ferritin, a primary iron-storage protein, becomes saturated with iron. It is vital to the body’s natural defense mechanism against iron overload, playing a critical role in neuroprotection. It… Read More... "Exploring Curcumin"
Vestibular therapy exercises are designed to improve the vestibular system’s function by challenging and retraining the brain to process information from the inner ear. Read More... "Retrain Your Brain with Vestibular Therapy"
What is RBD REM Sleep Behavior Disorder (RBD) is a severe secondary condition to neurological disorders in which the pontine areas of the brain controlling REM sleep no longer work correctly. Confirming the disorder requires observing repeated speaking episodes combined… Read More... "REM Sleep Behavior Disorder"
Overview 2022 has been a busy year on the awareness raising front, which is a brilliant feat for such a rare disease. With more awareness, there will likely be more patients diagnosed with superficial siderosis. My neurologist told me that… Read More... "What a Year! 2022 Summary"
From Tweetup to Meetup It had been over three years since I’d first met my friend Deb, who also has superficial siderosis. We met on Twitter in 2018 when we were both tweeting about superficial siderosis. Deb, her mum, and… Read More... "A Rare Reunion"
Nowhere to Go When I was first diagnosed with superficial siderosis (SS), there wasn’t much information around. It was a case of rummaging through Google to find things of relevance and chatting to other patients who had been diagnosed with… Read More... "What the SSRA Means to Me"
It was RUOK day, but I was not OK. Yesterday was RUOK day, but I wasn’t. If I had been asked, I would have fallen to pieces. I did, anyway. On Tuesday, I had to have my last beloved horse… Read More... "It’s OK not to be OK"
Making Plans Living with superficial siderosis is very frustrating, to say the least; it’s hard to plan anything due to the spontaneity of the symptoms, which regularly leads to a complete change in routine, where I find myself juggling the… Read More... "The Daily Frustrations of Superficial Siderosis"
Superficial siderosis can be excruciatingly draining on everyone it touches. Sometimes it feels like we’re running on empty. It’s been a while since I’ve shared what’s been going on with Gary. Our living with superficial siderosis. I’ve been reluctant to… Read More... "Running on Empty"
Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your physical and mental health will benefit. By moving towards a healthier diet, exercising to… Read More... "Wellbeing Therapy"
It’s always a good idea to prepare for your appointment, so you can get all the information you need out of it. Leaving with unanswered questions can cause anxiety and can leave you chasing things up when you’ve had the… Read More... "Preparing for a Medical Appointment"
Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your physical and mental health will benefit. By… Read More... "Reclaiming Your Independence, A Guide to Managing Hearing Loss"
Specially written for LivingWithSS.comRollene Janelle, Guest Author Superficial siderosis (SS) is considered a rare neurodegenerative condition. The prevalence of superficial siderosis is estimated to be one in one million individuals, with an estimated 200 diagnoses in the US for 2020.… Read More... "Improving Your Fitness"
Living with superficial siderosis – the patient’s journey Infratentorial superficial siderosis (iSS) is more commonly known as superficial siderosis of the central nervous system. It is a rare but sometimes disabling neurological condition that often affects hearing, balance, and mobility.… Read More... "UCL Presents A Virtual Live Panel Event"
Living Your BEST LIFE with Superficial Siderosis Our readers living with Superficial siderosis should be aware that living your best life means you need to look beyond simply treating the symptoms. Both your physical and mental health will benefit. By… Read More... "Exercises for Balance and Mobility"
Patient to Physician Communication a two-way street Quite often, patients with a rare condition experience a variety of complex symptoms. Do not let an appointment with your doctor leave you feeling as confused. Healthcare providers are constantly under pressure to… Read More... "Tips For Improved Patient-Physician Communication"
