- Von Hippel-Lindau Disease
- Interviews
Laurie's interview
How did all start?
mother became ill, realized this was something genetic, started testing for the children
Do you already have a diagnosis? How long did it take you to get it?
yes. was diagnosed officially in 1985 at age 15. had laser treatment to left eye when 9 yrs.
For what medical specialties have you been treated? What has been the most useful specialty for your?
neurosurgery, vascular surgeon, retina specialist. also seen by endocrinologist and urologist and oncologist. receiving dialysis three times a week.
most useful at this point is dialysis or my neurosurgeon
What has been the most useful thing for you so far?
family support
What have been your biggest difficulties?
loss of independence, not working and have limited social interaction outside of family
How has your social and family environment reacted? Have your social or family relationships changed?
i am seeing some people pull away. not as close with family as i used to be.
What things have you stopped doing?
working, household chores, pretty much everything. i need help ADL, difficult to feed myself at times. can not walk, drive, or move wheelchair around. My husband is typing this as i tell him what to write
What do you think about the future?
SUCKS!!! Not expecting things to improve physically. at point, the doctors are saying there is nothing that can be done except monitor and keep me comfortable.
So far, which years have been the best years in your life? What have you done during them?
in my 30's. second marriage, got to travel, raised 3 children, graduated college and worked as an LPN in nursing home. recently became Cubs fan. and have had the opportunity to go to a few games at Wrigley.
What would you like to do if you didn’t have your condition?
i would still be working. be traveling more often. go see my dad more often (actually see. i am blind) see what my grandson looks like. do things that able bodied people take for granted.
If you had to describe your life in a sentence, what would it be?
there is nothing that i would give up to have something back. i.e. would not give up husband to have sight back.
Finally, what advice would you give to a person in a similar situation?
do not take anything for granted. everything is a blessing. don't wait to live your life, it may not be there tomorrow
