Posted on 13 Comments

When We Connect We Are Stronger

When We Connect collage of FFB photos are in the body of the post

When We Connect We Are Stronger

Three of Diane Krek's landscape paintings are on easels behind a banquet table with Chinese Auction and Silent Auction items. In front of each auction item is a pink or blue foil gift bag for the raffle tickets.
Diane Krek’s Paintings, “BLT Art For A Cause”

This past weekend the Pennsylvania Council of the Blind (PCB) was an exhibitor at the Pittsburgh Vision Seminar. The seminar, hosted by the Foundation Fighting Blindness (FFB) reminded me once again of how lonely sight loss can be. When we connect we are stronger because losing one’s eyesight can be a lonely experience but it can be different.

The first person I met was so upset over her sister’s sight loss to diabetic retinopathy I thought she might break down. When I asked her if her sister was given a referral to low vision rehabilitation I wasn’t surprised when she told me no. This conversation set the tone as we spoke with many people and family members of those new to sight loss.

It’s Helpful to Know You Aren’t Alone

While those attending these events are looking for a cure to their inherited retinal disease I think it’s equally important to adapt. For this reason, I am so glad several of the exhibitors were blind or visually impaired. This was an opportunity for a vital connection between sighted and non-sighted communities. My friend Diane Krek, who was recently featured in one of our local newspapers, was there with her beautiful paintings. Then there was my friend Christine and I who represented PCB.

When I lost my sight it was my friends at PCB and our local chapter who helped me get through it. So Saturday was my chance to give back by letting people see us in action. It’s so gratifying being in a position of helping people understand they are not alone in their sight loss journey and assure them that life goes on.

Giving people a few simple tools like 20/20 pens and check writing guides along with other resources enlightened them. Advising others of our local PCB affiliate in Pittsburgh gave them the opportunity to join our peer network.

Gene Therapy & Latest News

While I couldn’t stay for the entire seminar, the speakers I heard were awesome. Dr. Leah Byrne, Assistant Professor, Department of Ophthalmology, University of Pittsburgh and Ben Shaberman, Senior Director of Communications, FFB shed light on the latest research. Another interesting tidbit of information was the My Retina Tracker Registry. The voluntary registry is designed to help accelerate the discovery of treatments and cures for those with inherited retinal diseases.

When We connect Featured Image Description:

A photo collage of images from the event. Left to right, the first photo is a blue and white FFB vertical banner. The only text I can read is Foundation Fighting Blindness and their website address. The second photo (top right) is the jam-packed hotel meeting room filled with people sitting at round tables. There is a big screen at the far right of the room where they shared a PowerPoint presentation. The third photo is the FFB registration table just outside if the meeting room.

13 thoughts on “When We Connect We Are Stronger

  1. Wow! Thank you for sharing with others, this is really amazing!!!

    1. Hey Wilson, how are you my friend? How’s your son doing? I’ll reach you through FB messenger.

      1. I’m doing well and my son too. His starting creating new friends and getting used to the place. We will keep in touch!

      2. I’m so glad to hear that you both are doing well.

      3. Thanks, a lot!!!

      4. You’re welcome!

      5. Thanks!!!

      6. Yes both we are happy, thank you for asking.

  2. I’m saying this as an OD who had to leave practice due to Multiple Sclerosis. One of the most frustrating things was to have a patient come in with low vision who was told there is no hope. (I encountered this with MS, as well.) Usually we could help and if not we sent the patient to a team of doctors who only did low vision. Connections are vital.

    1. Amen George! We’ve talked about this before and I do kinda get it why the docs aren’t making these referrals but wow, it’s not about them or their skill as a physcian. It’s about a quality of life for their patients. I rejoice each time I hear of a story where the doctor has come through on behalf of their patient. I didn’t even know I was considered low vision until after I was told “there wasn’t anything else that could be done.” My doctor was operating on the belief that my condition would improve and while it continued to decline I lost out on the opportunity to get an early start on the low vision assistance that would have made a world of difference.

      1. Yes, every person has skill and knowledge to share. None of us knows everything. Exactly as your stated, networking and referring benefit everyone.

  3. Years ago I worked for a low vision store and even designed their website, with the low vision person in mind. We regularly had people coming in who had come straight from their referring doctors office and they were devastated.

    Our job was to help them educate themselves and learn to become as autonomous as they could using aids, workarounds and tools. I’m no longer associated with the store, but I created a wonderful Resources tab on the website! There’s helpful articles, and tons of links to groups and associations, as well as large print newspapers etc.

    Search for Southwest Low Vision! (It’s located in Tucson but the owner will ship within the continental USA!

    Many clients wished to continue working and driving. Fortunately we could help with their work or school environment!

    I highly suggest Googling “Low Vision store near me” to find out local resources. Many have a Resources section on their website.

    Peace, Tamara
    http://Www.tamarakulish.com

    1. Oh wow, this is awesome information Tamara. There is a low vision store not too far from where I live but I get most of my stuff from Maxiaids. I’m going to check out the website you mentioned. The problem many people have after receiving their diagnosis is they aren’t getting the referrals so it’s good to know that in your area this didn’t seem to be happening. I didn’t get my referral to the low vision specialist until after I was declared legally blind. Had I received the referral earlier in the process it might have been a little less devastating. But like many other people I was simply told “We’re sorry there isn’t anything else we can do for you.” Advocates are working to educate doctors to make these referrals early to make the adjustment seemless.

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