Harlequin syndrome is a rare disorder characterized by flushing and sweating on only one side of the face typically induced by heat or exercise.
I have Harlequins and have been to see a Neurologist. He ordered a MRI of the brain and found nothing abnormal. He was aware of the one sided sweating but never gave it the name of Harlequin Syndrome. He told me the condition is almost always benign, only rarely is it caused by a tumor. Recently I saw a Neurosurgeon who said that the first Dr had the MRI done on the wrong part of my body--it should have been of the neck and upper chest. The consensus seems to be that it is a problem of the sympathetic nervous system, that the side that turns red is the normal side. I read all the information I could find on the web, which amounted to 5 or 6 articles that I found by using every search engine I've ever heard of. Also, I took pictures of myself while I was 1/2 red to show to my doctor. It is very exciting to actually find a community of people with this same weird and embarrassing problem.
One topic is:Harlequin Syndrome/ Heart/ Respiration/ Help. You can find more info by searching: red/sweating on one side face, half face, and other combinations. You can also go to: http://rarediseases.info.nih.gov/Default.aspx and click on the GARD info. I would say going to a Neuro. would probably get things started. FEW and I mean FEW people have this because of something serious. I have been fighting this battle for a long time now and they can not find anything wrong yet. There are a few more tests that still need to be done, but I'm taking a break from all the testing again. Through all my research, the BEST Neuro's to get appts with are ones at a teaching or University hospital as they have a team that can work together and are most up to date on the latest findings. Hope this helps.
Where on Medhelp.org do I find that thread? I couldn't find much information. I would love to talk to others with harlequin syndrome. I'm still trying to get my Dr. to believe it's a real problem. Yesterday I spent about 30 minutes outdoors cleaning some floor mats and I got SO hot and red on one side, it's simply embarrassing. I don't even want to exercise anymore, it's so noticeable. I'm wondering if I need to see a neurologist.
My friend who is like my second mom has found out she has Harlequin Syndrome- she is scared kind of in the dark and lacks internet access - I think she needs someone who is going through this to talk to and reassure her. I love her. I am far away and I also lack the knowledge to ease her mind.She is going in for a battery of tests on Friday -I am willing to give someone my personal email so I can give you her phone #- Thanks Tonia
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.
Enrolling is easy.
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.
17/10 Think now it might be Horners instead as his right seems to be affected too, mildly.
3 years ago had a schwanoma of the sympathetic nerve removed on the right side of my neck. The surgery was successful and resulted in only my...
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