In Memory of Diane Rohrmann

FEBRUARY 16, 2011
In Memory of Diane Rohrmann
While she struggled mightily with mobility issues and diminished vision due to PXE, she rarely complained, always looking to the future.

A founding supporter of PXE International and former coordinator of all PXE International's Support Group Offices, Diane Rohrmann of Fresno, CA died on January 13, 2011 at age 63. She was the beloved wife of Bob Rohrmann. A memorial service was held at Kerman Covenant Church on Saturday, February 5, 2011 at 11:00am.

Bob Rohrmann, Diane's husband, writes:

"Diane was first diagnosed with PXE at the age of 16 by her ophthalmologist, whom she was seeing for the first time due to distance vision problems she was having in the classroom. The doctor noticed the angioid streaks on her retinas, and after having another doctor confirm what he was seeing, told Diane and her mother what she had. Diane was devastated, not by the diagnosis, but because she was pulled from the dive team and placed into a modified PE class by her high school. She did say she got real good at ping-pong.

"Diane and I were married on February 24, 1976. When we went to the doctor to check about having children, her doctor advised us that he did not think it was safe for her to have children due to the PXE because of the potential for uncontrollable bleeding in childbirth. We took that very hard, but not having any other resources to tell us differently, did not have children. [See editor's note at the end of this article].

"In late 1995, shortly after getting connected to the web, it occurred to me to do a search for PXE, which brought up PXE International. Diane was excited to finally have a connection to a support group. Early the next year she was contacted by Sharon Terry, founding director of PXE International, and told that there was going to be a meeting in San Francisco and we were invited. It was great to see Diane get to meet another PXEer for the very first time, and she said later that she felt she wasn't an oddity anymore. She volunteered to be a contact person and talked to quite a few people over the years who either had PXE or were related to someone with PXE."

"I remember that meeting so well," says Sharon Terry, "and remember Diane with such great fondness. Her enthusiasm and support were contagious! I will miss her very much."

Bob states, "Diane had a bleed in her left eye about five years ago, which affected her central vision and later developed deterioration to the retina in her right eye. She was legally blind for several years, and even though she lost her ability to drive, she said the worst thing was not being able to read. She had assumed a leadership role at our church, and was frustrated that I had to become her eyes to read for her."

Diane grew up in the Reedley, CA area. Her best memories were of spending time on the nectarine ranch her grandparents lived on, where her grandfather was the ranch foreman. From chasing cats around the ranch when little to driving a tractor during harvest when she was older, she always yearned for the simple life that the ranch represented.  Even as an adult, she wanted to drive around that area west of Reedley in the summer time to smell the evening air with the scent of fruit on the trees.

Diane and Bob enjoyed a good life together, and loved to visit the central coast where Diane always dreamed of living. Diane enjoyed working at her home business for over 10 years selling Longaberger baskets and pottery. She struggled mightily with mobility issues and diminished vision due to PXE, yet she rarely complained, always looking to the future.

In memory of Diane, donations may be made to PXE International, 4301 Connecticut Ave. NW, Suite 404, Washington DC, 20008-2369. Or donate online. At donation purpose, select "In Memory of".

[Editor's note: Thanks to the wonderful study done by PXE International's Medical Director, Lionel Bercovitch, women are not given this erroneous advice anymore. For more information, please see our PXE and Pregnancy Bulletin].