Fahr’s Syndrome is a rare, genetic neurological disorder characterized by abnormal deposits of calcium in areas of the brain that control movement.
Hi. My friend was initially diagnosed with Fahr's in October after a series of fits and CT scan. This has now been changed to http://en.wikipedia.org/wiki/Pseudopseudohypoparathyroidism and he is seeking help.
Hello, My name is Brigitte and I am really confused if I have this disease or not. The CT scan says yes and I may have some symptoms or are they of other illnesses? I will see a neurologist in 2 weeks. I really would like detailed symptoms from real people and not abstracts or case studies. If anyone would care to share i'd appreciate it.
Hi I'm 36 year old female, I have no symptoms of note. A week and half ago I was working in my storage room and was hit on my nose. So protocol is CT Scan of sinuses. After that the radiologist stated I need to have a full brain CT Scan. I did the results devastated me. It's dense and a lot of it. Looking back at family members I discover two of my three uncles passed with this then my dad as well. The good news I guess is my grandmother died at 77 with it, the uncles died between 55-65 years of age. I've not found any experts for this disease, which is discouraging.
Hi Sonny, my mother was just diagnosed and I will be tested soon. I am in my 50\s and have suffered with leg tremors for about 15 years, they could not find the cause of my parkinsonism, but I do have severe osteoarthritis throughout my spine.. Fortunately I have not had any issues with my short term memory, my main issues are movement disorder and mobility issues. I do also suffer with mild OCD and my vitamin D levels are very low. I have read that these are also associated with Fahrs Syndrome. I cant wait to be tested! Finally after all these years, I might find out the source of my mobility problem. I am excited.
Hello there, I see there are a few other members besides myself w/ this condition. I thought maybe we can introduce ourselves and say a little about how it affects you. My name is Sonny, I'm 30 yrs old and was diagnosed when I was 21 but started seeing a difference around 27... I am forgetful a lot, my short term memory is really bad that affects everyday living.
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
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After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
Fahr's has recently made a debut in my family, and I plan to get tested in 2 months time.
a treatment. I was hoping to find it here.
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