Why can't the metabolic specialists that I deal with reagrding my OTC remember that I am an adult and as of Memorial Day weekend 2010 will have been diagnosed for 25 years and as a result I am familiar with this disorder and sometimes I know what is best for me....FRUSTRATING!!!!
I am an adult and was diagnosed at age 49. Up til then I lived in hell every day. Now I live in hell some days. What really should be is a collaboration between us and our caregivers. Those of who are old enough and do not have brain damage as many do want to be part of the treatment plan and know the entire medical story.
ReplyDeleteBut remember as one specialist told me. Many of the doctors were use to dealing with babies that are now growing up and speaking out. Even the nutritionists are geared to babies and kidos.
I am not to arrogant to believe I know more than them. I believe we need to share information to make my life better. I have just spent three days reading medical papers to determine if a problem I was having could be UCD related. Looks like it may be. So I put it together in a research paper and presented to my doctor. Now we are scheduled to talk about my problem that would have seemed totally unrelated to the disease. But see the problem. Maybe the UCD groups would not have known about the link regarding my findings if I had not been able to talk about it so well.
Many other patients and families would be chasing tails with several doctors. UCDs touch far more than many or all of us realize.