Sit and Quit? Or Fight It!

NOVEMBER 18, 2011
By Alie Tawah, Intern, PXE International

This article first appeared in the Fall 2011 PXE International MemberGram

Anti-VEGF treatments have helped reduce the impact that PXE has on eyesight. Unfortunately, these treatment options are less than ten years old and for many PXEers, it’s too late. As frustrating as it may be to be put in such a situation, it does not have to stop you from enjoying your life. This is a story of a fellow PXEer who is determined to enjoy her life.

Annette Williamson, the director of PJ’s College of Cosmetology in Richmond, Indiana, was driving home when she saw two trucks coming directly at her vehicle and got scared. As she got closer to the trucks, she realized there was only one. She rushed to her eye doctor to find out what was going on. After seeing a series of specialists, one finally told her that the vessel within her left eye was bleeding and he would try using laser surgery to prevent the loss of her eyesight. The treatment proved ineffective and Annette lost central vision in her left eye.

This same day she would find out, at age 34, that she had Pseudoxanthoma Elasticum (PXE) and would probably become visually impaired in her right eye as well. “I was told within a year the other eye would go too.”

From then on Annette made changes to her diet and exercise routine. “I ate a lot more broccoli and cauliflower and I did my walk five days a week.” Annette continued her work in the cosmetology school with her one good eye. It was not until six years later that she lost sight in her right eye.

Annette is now 51 years old and although legally blind, she still works at her cosmetology school but with reduced hours. When asked how she manages to do her work and teach others the trade, she answered, “It’s been hard but you can’t let that get you down, you just can’t.”

After losing vision in her left eye, she prepared for the loss of vision in the right eye by letting her family and friends know and making arrangements at her work place for when the time came. Although she was never really prepared, “You keep telling yourself you will soon be blind but you never really understand what it will be like.”

Annette has adjusted and is still learning. “Do people know I’m blind? No they don’t. I have to tell them.” She laughs a little after she recounts how people reacted and remembers the many who have told her that they thought she was strange because she did not look directly at them while in conversation.

Two or three years after becoming legally blind Annette found out about The Center for the Blind and Vision Impaired in her area from one of her clients. Through the resources at the center she got acquainted with closed circuit television (CCTV) video magnifier and ZoomText, a computer program that magnifies everything on the computer screen.

Now she has both aids at her home and in her workplace, purchased by the center*. Annette has nothing but good things to say about them. “It’s wonderful! You can just go into a blind center. It doesn’t matter how much you make; that’s just how they are. They don’t ask, they’ll take care of you. Mine did!”

Since she started using the center, Annette refers people to it if she thinks it could be helpful for them. “I’ve helped a lot of people get CCTVs.” Annette also notes that the services are a little different for those who no longer work. “I think they did that because I work. I got it free but some people who don’t work get it subsidized or based on income.”

Annette stays determined. “As for stopping my life, it’s not going to. It’s not going to.”

She notes her family has tremendously helped her situation as well. “I’ve been lucky with my blindness. My husband takes me to work then he goes to the grocery. What girl wouldn’t want that?”

“With PXE,” Annette says with fierceness, “you can sit and quit or you can fight it. I refuse to let it have its way.” She still worries at times. “It’s getting harder. I know that it’s in my whole body, not just my eyes. When you get older it’s a lot to think about.” But she tells herself and says to everyone, “Be positive. No matter your situation. Be positive!”

* Depending on your geographic location, the aid center in your area may not provide the same services.