A patient-led nonprofit and global community for Bietti’s Crystalline Dystrophy patients.
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ALT The hidden flaws in rare disease research. Below the text there’s an illustration of a worried woman using a magnifying glass to look for answers among speech bubbles with question marks in them.
ALT Disabilities indeed come in many forms and are sort of normal in a larger sense…Many carry on and thrive, and we can too. Glad we have more tools and this community to make us smarter and stronger. BCD Patient
ALT Blind perceptions I know there's strength inside of you though all you feel is numb Don't be afraid as eye sight fades for what is still to come You will adjust in these words trust we share these tunnelled eyes A mix of strength with anxiousness the same in me applies My shins are full of bruises and my confidence misplaced At time self-isolated felt the world too much to face So I'm here to remind you all the times we fail don't matter There's lots of misconceptions still let's remind them of the latter It's not that complicated change how blindness is defined
ALT Let's educate articulate the many ways we're blind It's never all or nothing many shades and different views Yet there's a stereotype they keep on printing in the news No wonder some of us have fears when out in crowded place They see the cane but can’t explain why we look them in the face There's some of us who stay at home convinced of the excuse that because we don't look blind enough there's a need to be recluse Don't waste your life on people whose opinions are way off Just swipe your cane with courage hold your head with pride aloft
ALT So never doubt what we're about despite what some believe Come join me on my mission change the way we are perceived Won't let the haze that fills my eyes consume the rest of me There's more to life than edge of knife despite what I can't see Try not to care as people stare With looks of vague suspicion But why should I explain to them The terms of my condition Though it's much simpler to stay home won't waste another day Their pity's just an obstacle that's getting in my way Though I am blind won’t be confined by others misconceptions
ALT This poetry that spills from me will change their blind perceptions Though anxious chest and days depressed have far from disappeared I've learned to breathe while I still grieve control these things I've feared My kids look on not on what's gone but all each day I teach For if tomorrow their eyes pay life's dreams are still in reach So I'll not cry as vision dies won't focus on the blur No point in holding on to how Those days and eyes once were
ALT 09:00 Sunday, January 9th. Phone Notification: Call Reminder. 2mins ago. Connect with our global bcd community by joining our monthly zoom call which will take place this Sunday, January 9th (9AM PST).
ALT Thank You for supporting Invincible Vision
ALT "I am so thankful for Invincible Vision for giving us a way to reach out and share the knowledge that we have as we’ve journeyed with this disease" -Laurel, BCD Patient
ALT Invincible Vision invites Morten Bonde. Sunday, December 12th 9am Pacific Time. ”Fear is a huge opponent in our lives, but we get to decide how big a role it will play”
ALT Invincible Vision invites Morten Bonde. Sunday, December 12th at 9AM Pacific Time. ”I found a process that turned my fading vision into clarity. I turned a weakness into a strength. That process can be copied by anyone for any challenge in life”
ALT Invincible Vision invites Morten Bonde as a special guest.
ALT Did you know? Retinitis Pigmentosa (RP) is the leading cause of inherited blindness, consisting of close to 100 retinal degenerative disorders. Bietti's Crystalline Dystrophy (BCD) accounts for 3% of RP and 10% of autosomal recessive RP. BCD is estimated to affect more than 100,000 patients globally.
ALT BCD symptoms. Symptoms: progressive night blindness, distorted vision, sensitive to strong light, reduced visual acuity, blind spots in visual fields, reduced contrast sensitivity, impaired color vision, and eventually legal blindness. Crystal-like deposits in the retina and sometimes cornea are also very common among BCD patients.
ALT 09:00 Sunday, November 14. Phone Notification: Call Reminder. 2mins ago. This Sunday a BCD patient will share their story and habits/practices that helped them overcome the feeling of hopelessness and helped them thrive! Notification options: Okay. Got it!
ALT BCD struck him when his career was at its peak. Can you imagine what going blind means to a person who loves to read and drive? It is a painful process to see your loved one's vision deteriorating day by day. But we are still holding on with a glimpse of hope. Hoping that somewhere, someday, there will be a cure for BCD. To all BCD patients, please do not give up!