Research on Vitiligo

[Iammarilyn]

Just a note for anyone interested. I have been in contact with a Dr.
Nordlund from the University of Cincinnatti (gosh I hate to spell that word).
I faxed him a letter about my daughter and he very graciously and warmly
responded to me by letter. His words were encouraging in the fact that there
is research going on for vitiligo. There is an international conference on
November 1999 where researchers and investigators from all over the world
present papers and new findings on pigment research, not just vitiligo, but
other pigment disorders. I believe the conference and society is called the
Pan Amiercan Society for Pigment Research. I first read about it on the web
somewhere and I was happy to hear that Dr. Nordlund is a significant
participant in this society. He said that he did not expect any great
breakthroughs but the research and interest is international.

He has heard of Ratokderm and calls it a success. He compares it to sunlight
or a type of UVB that he says is available in my community. He said that
Ratokderm is only offered in Milan, as we all know, but similar treatments do
exist. Not the same equipment, which of course is superior in Milan.

Another interesting thing, I was wondering about the sunglasses that people
have to wear during PUVA treatment. He confirmed what I heard about a contact
lens being available for this instead of those crazy wrap around sunglasses.
Expensive, but available.

His last paragraph was near and dear to my heart. He feels that there will be
a discovery of the cause/causes of vitiligo and hence a cure or better
treatment in my daughter's lifetime (she is 14). I know I am grasping at
straws but I guess we all like to hear a positive comment. My other daughter
(12) is developing vitiligo as well, itching with hers. Anyone else have
that?

Hats off to Dr. James Nordlund, a doctor who cares.

Marilyn

[Randy_Law]

Marilyn - has a doctor told you that what your daughters have is definitely
vitiligo and not say alopecia or something else? I don't think itching is
one of the symptoms of vitiligo...except maybe that the skin is more sub
sensitive...

Randy

Iammarilyn <iamma...@aol.com> wrote in message
news:19990929101654...@ng-cq1.aol.com...

[Susan Stilwill]

At first, I had itching with my vitiligo. The doctor said it was a fungus when I
had my first biopsy done. When I had the second biopsy, they confirmed vitiligo. I
was planning to start with PUVA treatment in my doctor's office next month, but
now there is a concern because I am having lasik eye surgery. I have to get
approval from the eye doctor first (my vitiligo doctor said I should not start this
treatment for several months after the lazik).

I had the Addison's Disease test this morning. What a pain in the ass (pardon the
words). The test lab had never done the test. I had to wait 2 hours for my doctor
to get in to get cortisol. The injection was a little painful, but no big deal.
Basically, the lab took a base sample of blood, and then I went to the doctor's
office for the cortisol injection--then back to the lab to have two samples of
blood drawn a half hour apart. I know it is a stretch (because only 10 percent of
the people with Addison's have vitiligo), but I figured it was worth it.

I always have tested negetaive for thyroid problems, but my doctor also ordered a
specific blood test to see if I was producing antibodies that attack the thyroid.
It just amazes me that the doctor doesn't have more information. I asked for the
Addison's test.

I am now going to try the alternative treatment route. I am meeting with a
nutritionist in Dallas who is said to have helped a number of people with
diseases/conditions that traditional medicine did not cure. The appointment in on
the 13th. I'll let you know what happens.

Please keep us updated if you hear any additional information.

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