Mail

PXE Redux

To the Editor:
Once again I would like to thank you for printing the information about PXE.
I believe I left out one Very Important word, which makes a big difference.
When I wrote about another person and myself the only two on the Cape with PXE, I should have said, “The only two Registered on the Cape with PXE.”

So, if there is anyone else on the Cape with PXE, we would invite them to register at the web site www.pxe.org. Once registered, a Chat Line is one of the resources available to them so they do not feel alone. Since PXE is an international Chat Line, it includes people from South Africa, New Zealand, Italy, to name just a few.

If a person suspects the possibility of PXE, it is good to see an Ophthalmologist and possibly have a biopsy done.
Again, thank you.
Kim Douglas.
Falmouth

To The Editor:
In regard to your note under "The Loneliness of the “Orphan” sufferer (summer 2008 issue of To Your Good Health) I am amazed that a doctor would tell you that information on two rare conditions would not be compelling to most readers. Surely those who take the time to read this newspaper are interested in health, and many people embrace the value in having information that may be useful in the present or future, for oneself or for one’s friends, co-workers, and loved ones.

Knowledge is power. While many people who enjoy extraordinary good health choose to go to great lengths to avoid anyone who is ill, and any information on something that could possibly befall them (Lyme Disease and Fibromyalgia are great examples), others see information as a way to increase their ability to help others should the need arise.

Unfortunately, it is often the afflicted person who knows more about the rare disease than the doctors, and they are the ones who research, inform, and reach out to others.
Diane Mandeville
Marstons Mills

(Editor’s note: See above. But, again, when space is limited, one must concentrate on what information will do the most good to the most people.)