Hi hello, and thank you for visiting my blog! This blog is a place I’ve chosen to be very candid in sharing my side of the world with some humor and spice.
why the name?
One Rare Sunshine is describing myself! I have a rare disorder (details below), and I earned the nickname “Sunshine” in high school for my outgoing, positive personality.
The title “A Chick With A Stick” comes from many college experiences my freshman year as a blind cane user. I’m well known all over campus for my long, white cane, so I’ve come to embrace it. My add-on “A Girl With A Guide” is meant to also incorporate my recent lifestyle change of my lovely yellow lab, Romana, as my guide dog (she’ll often be featured here as well, and here’s some FAQs I wrote before heading to training).
who are you?
My name is Cassandra, and I’m a second-year student at the Ohio State University in Columbus, OH. I study computer science & engineering and hope to use technology to improve equal access for persons with disabilities (more details on this post).
I have a rare disorder called Hermansky-Pudlak Syndrome (HPS) that affects 1 in every 500,000 to 1,000,000 worldwide, but only 1 in every 1,600 Puerto Ricans (meaning me). It’s a complicated matter, but I’ll break it down (in bullet points, my favorite!):
- Albinism: lack of pigment in hair, skin, and eyes, often resulting in fair skin, light hair, and some degree of visual impairment. I, like many others, am legally blind. However, I’m not “lights out” blind, meaning I have a degree of vision (terrible, as it may be).
- Bleeding: platelets in your blood make it clot, such as if you get a cut. HPS platelets lack the chemical sacs that helps us clot, so we have increased bleeding/bruising. In other words, normal platelets look like chocolate chip cookies; but ours are missing chocolate chips, so they’re sugar cookies!
- (Optional) Colitis/Irritable Bowel Disease: the reason it’s optional is it’s HPS subtype dependent (a completely different story). HPS colitis/IBD may come around the age of 15 and, similar to Crohn’s Disease, can affect anywhere on the GI tract, particularly the large intestine (colon). Many people’s colitis can be tamed under medication, but some, like mine, are young, wild, and free, so we take them out (no colon, still rollin). I have a permanent ileostomy (learn more about my ostomy story) now and pooping in a bag was one of the best decisions I’ve made (please click the poop in a bag link; you won’t be disappointed).
- (Optional) Pulmonary Fibrosis: again, subtype dependent, but really important as it has no cure. The support group for people with HPS (the HPS Network) is actively looking for doctors and researchers to find a cure and save lives. This usually manifests around age 30 and is currently only considered cured via lung transplant (so please register to be an organ donor!). I get my lungs checked yearly, but per my pulmonologist (lung doctor), they’re looking pretty sexy now.
what do you blog about?
Things you might see on this blog:
- disability-related posts (blindness, health, disability advocacy)
- college-y things (sorority life, classes, my future/career)
- faith (something I’m passionate about)
I have questions. can I email you?
Yes, and please do! Check out my nifty contact page on the menu.
how can I donate to your rare disease with the long name?
Thanks for asking! The HPS Network relies on people’s generous donations and the occasional grant so we can find a cure and do more research. Please go to the HPS Network’s website and click the donate link.