Oculocutaneous Albinism is a rare disorder characterized by a partial or total lack of melanin pigment in the eyes, skin and hair.
I have OCA2 with CAIS, Asperger's Syndrome, SMA4(Kennedy Disease), SMA3, and Vitiligo. I have a variety of other health issues primarily from injury. Such as TBI causing brain aneurysms(in past I had 3 happen) and spinal injury. Though I have also survived more than one type of cancer. Because of a mix of traits I currently look white. Well except if I wear my hair loose. Then the afro sort of shows. I tend to braid or pin back my hair though. I have strawberry blond hair and hazel eyes. I am part asian, black, and european. My father was half black and part asian. My mom was half asian and part european. Because of health problems I've had eye surgeries and other procedures. Because of implanted lenses, other surgeries, and wearing glasses I can see reasonable. Though without all that I'm nearly completely blind. Even with the implants and glasses I have to increase font sizes or wear reading glasses or craft glasses. I right now kind of wish I had computer glasses as the font as I type this is just barely visible to me. There was a time I looked more black though I was lighter black skinned. Before the eye surgeries and before cancer treatment I discovered I was having more pigment loss. After all that and treatment for burns and scar removals I look normal enough but it feels like I've lost part of my cultural identity. My first aneurism happened in Spain while I was working at an school and observatory. I later had a second one in the US and a 3rd in Canada. It caused me memory loss that at one point was quite severe. In the end I gradually got my memory back but not enough to ever work in my old field of work again.(its also been many years since I had to leave it) I also was left only speaking english. I can't speak the same languages I knew as a little girl. I recognize little bits and pieces but that's not the same think as being fluent. Before the pigment loss I was accepted in Benin as part of the black community though at the time cautious in parts of africa because of my hair color. Some places redheaded or blond blacks would be hunted over superstitious things. So I'd cover my hair. Later I could show my hair in asia but after my eye folds were gone people just thought I was latin or white. Anyone else have issues with cultural identity because of albinism or associated problems? If someone asks where I'm from or my background I do admit I'm part black but an albino people don't say much. If I say I'm part asian it's like "huh? your eyes aren't right." I tell them eye surgery but some laugh and say I look white to them. Years ago people were a bit more understanding because I was still spotty. Now I have various sized dark spots on me(arms) about 5mm long at the largest. Rest of me is light and though sunburns doesn't really tan.
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.
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.