Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Questions sent to GARD may be posted here if the information could be helpful to others. We remove all identifying information when posting a question to protect your privacy. If you do not want your question posted, please let us know. Submit a new question
I need SCD answers, research trials, a support group and help finding a doctor who is familiar with SCD. I recently learned I have SCD. After an MRI confirmation, I was told it was incurable, progressive, not treatable, and eventually I would need to use a walker before eventually winding up in a wheelchair - and be unable to speak. What else will happen to me? What other coordinated voluntary functions might be affected? Chewing? Bowel/bladder control? Writing? See answer