Everyone loves something free but too often there’s some kind of string attached. The item might be free but the cost of shipping and handling is outrageous, or in claiming the free item you end up in a never-ending membership. Good news! Livingwithss.com has discovered something that is not only free but also useful to our superficial siderosis patient…
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…
Superficial Siderosis. Subpial Siderosis. Infratentorial Superficial Siderosis. No matter how your doctor officially labels your diagnosis odds are no one has the slightest idea of the battle you are about to face. A rare neurodegenerative condition so uncommon it’s often not recognized by the rare disease organizations tasked with supporting us.. What is Superficial Siderosis? Superficial Siderosis is a…
Your Superficial Siderosis community advocates, the Living With Superficial Siderosis website and The Silent Bleed -Your Superficial Siderosis Charity have joined together in a grassroots effort to support the launch of a patient-powered registry. You are being asked to take part. Before you agree to participate in this volunteer effort, it is important that you understand what this registry is…
Tracking Your Hemosiderin There has been a definite increase in people diagnosed with superficial siderosis. The improvements in neuroimaging have resulted in advanced iron sensitive 2-D and 3-D MRI techniques. Thankfully you can now be diagnosed in vivo and, if you’re fortunate, early enough to do something. Researchers have now identified three branches of superficial siderosis, each with a…
Communication must be a two-way street Rare disease patients often battle a variety of complex clinical symptoms. A visit to your specialist often results in as much confusion by the end of your appointment as at the beginning. Healthcare providers are often under pressure to keep patient face time to a minimum, so clear communication is a vital step…
Finding a user-friendly exercise program for patients diagnosed with related ataxia symptoms isn’t easy. For example, Gary is limited to lifting 10lbs so he doesn’t cause fresh bleeding into his CNS. Standing or sitting with free weights is a no-no; even without the lifting limit, you wouldn’t want to be the spotter with his balance problem. Before his…
Life with a rare disease or chronic illness has a way of taking over; juggling responsibilities, appointments, kids, and family. Take your meds on time. Eat something. Try to work. Order your meds. Unless you’re lucky enough to have perfect drug coverage the last one is always a heartbreaker. People who battle chronic illness often struggle to cover their…
Five-Two Plan Some of our earliest blog posts explained Dr. Levy’s suggested medication dosing schedule and diet recommendations. We dubbed this the Five-Two Diet Plan so we would have an easy way to write about it. Two and a half years in and we can report our high/low iron foods cycle diet plan is a success at reducing Gary’s…
Life expectancy, on the surface a straightforward question. It’s human nature to wonder “How long will I live?” A life-changing illness and thoughts like this can consume you. Superficial Siderosis Life Expectancy, two words and it becomes intensely personal. The early impressions were dark; no cure, the damage is irreversible and fatal. That word fatal is a definite attention grab. The day…
Germ Magnet Immune System Life as a germ magnet. The average person will stroll through life never giving much thought to living with a weak immune system. A person with Superficial Siderosis will often find out the hard way that caution should be the word of the day. Every day we’re bombarded with invisible bugs. You think you’ve taken care…
Putting A Face On The Enemy We’ve all read the descriptions of how hemosiderin deposits (Iron Salts) form. Do you sit looking at the MRI scan results wondering just where we are supposed to be looking? Nothing explains it better than a picture. When you look closely at this photo of hemosiderin in the cerebellum, you can see how thick the…
Finding The Iron Content Of Everyday Foods I’ll be honest – this is a tough one – no, you don’t have to follow the 5/2 diet cycle while on Ferriprox. Gary does because we’re trying to get our money’s worth. In March of 2014, when first diagnosed, the radiology report noted there was only “mild associated cerebellar atrophy.”…
Green tea has enjoyed such a surge in popularity that more than a few people are skeptical. Every healthy living blog touts the benefits of green tea for everything from cardiovascular health, diabetes or weight loss. That will raise an eyebrow or two, but when you do some research, you may find yourself changing your mind. One of…
Giving Ferriprox A Chance When we decided to give Ferriprox a chance, we weren’t aware how hard getting your health insurance company to approve a tier 5 drug for off-label use is. Luckily, we have a hematologist experienced in gaining approval for high-level medications for his patients. Five months passed from when Gary was first diagnosed until the first…
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