Our superficial siderosis Facebook family is a tightknit group. We share our problems and successes; we listen and learn from each other. It doesn’t matter that we’ve never met because, along the way, it began to feel like we know each other. Still, no matter how our group has grown these past years, there will always be one more diagnosis, and one more family learning someone they love has superficial siderosis.
Twenty-five years have passed since rare disease advocacy organizations first recognized the need for creating patient-powered registries to attract meaningful engagement with researchers. A patient-powered registry (PPR) or patient-powered research network (PPRN) empowers individuals to contribute to translational science in meaningful ways.
Rare Disease Week kicks off for the SSRA with a trip to our Chief Medical Advisor, Dr. Michael Levys’, new research home with the Mass General Research Institute. What better way to celebrate than a giveaway! With a few clicks or taps, you can be entered to win some really sweet swag from the good folks at Massachusetts General Hospital. You have a chance to win an Official MGH Men or Woman’s zip-front fleece jacket, MGH Ball Cap, or an official grey scarf embroidered with our SSRA logo. There will be several winners so why not enter? The contest details are below. Mass General is the #1 Hospital on the East Coast and named #2 in America by U.S. News and World Report. They are the only hospital in America to be recognized across all 16 specialties assessed by U.S. News. Let’s talk about Dr. Levys’ new facilities for a
We were thrilled to welcome just shy of 100 supporters to our 2019 Believe in Hope Benefit Dinner, December 7, 2019, at the Ingleside Hotel in Pewaukee, Wisconsin. Our first Superficial Siderosis Research Alliance benefit dinner was indeed a fantastic evening. Racing against a very short deadline, SSRA event coordinator Sue Dempsey, SSRA President Kyle Dempsey, and our volunteers showed what the SSRA is capable of when a motivated group works together. Ticket sales were almost double original estimates requiring a venue change and room size upgrade to accommodate this wonderful group of people. Be sure to visit our benefit dinner photo gallery. The evening began with a guitar duo provided by SSRA treasurer Lloyd Gleisner and Jeff Nesheim during the pre-dinner meet and greet. Guests enjoyed cocktails as the silent auction bidding opened. Every auction item was successfully bid on before the night ended, and one lucky live bidder went
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 and caregiver community. The writers of Brain & Life® offer interviews, insights, and information which focus on the relationship between neurological disease and brain health. Available in both a free print edition to U.S. residents and to a worldwide audience in an online format, Brain & Life ® magazine delivers both patients and their caregivers’ regular updates on healthy living, neurological disorders, caregiving, research, patient essays, and resources. Originally published as Neurology Now®, Brain & Life ® magazine is the work of the American Academy of Neurology (AAN). The AAN is
Meet Kyle and Sue Dempsey There is no greater motivating force than the sense of urgency and concern you experience as parents when your child is diagnosed with superficial siderosis, an ultra-rare neurodegenerative disease that affects less than one in three million persons worldwide. Superficial siderosis entered our lives as a result of head trauma from an auto accident. Our daughter is one of the lucky few to receive a correct diagnosis early on in the progression. Our search for treatment options has now included surgery to repair an on-going bleed in an attempt to stop the build-up of hemosiderin and trying to remove the neurodegenerative existing iron through chelation. While we hope she will be given the chance for a fairly normal life, we understand that research is critical to the long term success for those with this disease. We have experienced first-hand how rare this disease is and the
The Superficial Siderosis Research Alliance is pleased to announce Michael Levy MD, PhD as the SSRA Board Chief Medical Advisor. Dr. Michael 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 program in 2005, a fellowship in neuroimmunology in 2008, was a member of the faculty at Johns Hopkins University since 2009 and was the Director of the Johns Hopkins Neuromyelitis Optica Clinic. He first became aware of superficial siderosis during his residency at the Johns Hopkins Hospital when a 48-year-old patient presented with unexplained symptoms and a two-year history of worsening gait, clumsiness, leg cramping, memory impairment, and dysarthria. The patient’s medical history revealed a two-week hospital admission at the age of three after being involved in an auto
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. They will happily accept one-time donations or if you are generously inclined you may now schedule a regular monthly gift. https:/www.thesilentbleed.co.uk/donate donate Amanda, tell everyone about your background. I’m currently a freelance copywriter – so that’s words for websites, brochures and even beermats and bag labels in the past. I work with startups and large companies – the agency I work with has just landed a contract to rebrand a city, which should be interesting. I spent years working in office management, which helps with the practical side of running the
Rhys Holmes loves music. A 28-year-old Welshman, he spent time in the music program at Glamorgan University. An accomplished lead guitarist and background vocalist, Rhys followed his dream of hitting the road. He spent time traveling through London in a van with fellow bandmate Nick Byrne while working for a supermarket. In 1998, when Rhys was only eight, he went through surgery to remove a benign brain tumor. Other than fighting off a bout of meningitis post surgery he returned to school and happily resumed his passion as an avid footballer playing for his local club, Cardiff Soccer School of Excellence and Newport Schoolboys. When symptoms returned in 2001 Rhys was diagnosed with hydrocephalus. His surgeon inserted a VP shunt which led to multiple surgeries during the next four years. His doctor informed his dad he would have to give up football. The news devastated Rhys so his father
It’s human nature to wonder How long will I live? When you’ve been diagnosed with a life-changing ultra-rare illness like superficial siderosis thoughts like this can consume you. Superficial Siderosis Life Expectancy, four words make it intensely personal. The early impressions I found online were dark; there is no cure, the damage is irreversible and fatal. The word fatal is a definite attention grabber. The day we found out about superficial siderosis I read that one single sentence in a very early report and my heart dropped. Three Five years into this journey and we have first-hand insight with a much clearer understanding of the nature of this disease. If you review the possible combination of symptoms that may assault you, it should become clear while you may suffer body and soul, none are life-threatening in an immediate sense. There is no doubt the toll on your body is punishing. The
Superficial Siderosis Webinar Transcript Presented by Dr. Michael Levy To view the recorded webinar you may watch here Download a copy of the transcript and slides here Click on the individual slide to view larger Hi, my name is Dr. Michael Levy. I’m an assistant professor at Johns Hopkins University in Baltimore and a neurologist. I see patients with Superficial Siderosis of the nervous system. This webinar was really a joint effort with my patients on Facebook, who recruited me to present a twenty to thirty minute overview about Superficial Siderosis. Today I’ll go through just kind of the broad strokes of the pathophysiology of the disease, at least the parts we understand. We’ll work out the treatment options that are available. First, what is Superficial Siderosis? In broad brush strokes, Superficial Siderosis is an iron overload condition of the brain and spinal cord. Patients with Superficial Siderosis
Superficial Siderosis Webinar In this webinar, Dr. Michael Levy, The Johns Hopkins Hospital, Department of Neurology explains just precisely what Superficial Siderosis is. Listen to an explanation of the known causes, how your doctor will make the diagnoses and what your treatment options are in this easy to understand 30-minute presentation. To view a written transcript of this webinar click here To download the transcript and slides in .pdf form click here Huge thanks to James Hines for coordinating this webinar and Dr. Micheal Levy
Superficial Siderosis Symptoms List There are more than 30 recognized clinical Superficial Siderosis symptoms. Sensorineural Hearing Loss, Ataxia, and Myelopathy are considered to be the three classic signs. We have used these as parent categories¹ for ease of sorting our glossary terms into sub-categories. At least one or two of the big three signs will present in more than 50% of patients. It is rare for one individual to be affected by every one of these conditions. A few of the following symptoms are very rare. There has been some debate about tremors. Tremors are a clinical symptom of some types of ataxia, but some physicians disagree they are Superficial Siderosis related. It has been suggested they may be associated with unrelated medical conditions. Clinical Symptom Glossary Anisocoria Anosmia Ataxia Body Pain Bowel Function Cerebellar Dysarthria Craniospinal Hypotension Dementia Dental Pain Depression Diplopia Dysdiadochokinesia (DDK) Dysphagia Fatigue Gait