Jane A. Johnston and Tylen John each tell
their own story
Scleroderma: tightening of the skin. Scleraderma is a
chronic autoimmune disease of the connective tissue, generally classified as
one of the rheumatic diseases.
Janes'
story: It took almost a year for the diagnosis after I felt the first throbbing
in my fingers. They swelled up very suddenly one day and I thought that I was
getting arthritis in my fingers as had my mother. But in a few days they went
back to normal and I forgot the strange occurrence until months later when I
began to ache all over and experienced color changes on the trunk of my body.
Because I
take yoga classes in a very hot room, my former personal physician guessed that
I was allergic to heat and did not send me on to a specialist. On my own, I
sought an osteo man because of the pains. He found me to be fine but had no
idea what the trouble could be and he also did not send me on to another
physician.
Finally, I
called a dermatologist who had treated my husband for Psoriasis and he made a
ballpark guess that was close, but incorrect. Because Scleroderma takes so many
forms no two people get it in the same way.
A biopsy was
unclear so I was being treated with sun bathing and I was feeling worse each
day. I am an actress with a wonderful job playing Vera to Juliette Prouse’s
"Maine" for three months in Lake Tahoe. Little did we know that as I
was getting sicker, Juliette was dying. Upon my return to LA , my first visit
to my skin doctor confirmed on sight that I had Scleroderma and we found a
wonderful Rheumatologist who agreed that I should try the drug, Penicillamine
which has numerous side effects.
I sent for
all of the information on the disease from The World Health Organization, read
and discarded that which I would or could not apply to myself. There are all
sorts of goofy ideas out there about how to treat each patient and I chose what
made sense to me. Because we did not know how deeply I was affected, I started
taking lots of fish oil capsules in an effort to grease myself internally. I
listened, as did my husband, to a wellness tape by Maryanne Williamson every
night for a month We fell asleep to her uplifting words and allowed them to
penetrate our subconscious until we no longer needed the boost as we were
healing on our own.
I became
certain that I could live with what had befallen me and chose to have my body
love the penicillamine and it began to work on me faster and earlier than had
been expected. In two years or so I was off the drug and my body had softened
up almost totally and I have been declared, arrested. My energy is back and I
have begun singing again and working hard to regain the voice I had lost while
ill. My larynx had been affected, but there is no evidence that any of my
internal organs have been.
In
Scleroderma there is an overproduction of collagen (connective tissue) in one’s
body so the internal organs can be involved. Since Scleroderma affects mostly
women between the ages of 20 and 50, 1 am a rare bird because I was 55 when
hit.
Asked why I
was spared more full involvement, my doctors cite two possible reasons: 1. my
excellent health and physical condition, 2.my upbeat attitude. I never dwelled
on the illness, but concentrated on making each day count.
It seems to
have worked.
BY BRANDI BARD (partially re- printed with
permission using information learned from an article by Timothy Hanke of the
Scleroderma foundation.)
According to
Hollywood, most young Americans are beautiful and live in California. This
description really fits Tylen John who is also a former Playboy Playmate (Miss
March 1992).
These days
Tylen no longer qualifies as either single or a party girl in her twenties. Tylyn
is thirty something and married to Lou Aviles. Aviles is a personable and
straightforward former soldier who works for the California Highway Patrol as a
public affairs officer. They have a two-year old son Anthony who looks like a
miniature linebacker for a professional football team.
In 1999
Tylen was diagnosed with Scleroderma, a disease that she had never even heard
of then. "What's wrong with me ?" she said. Over the next year Tylen
went to five different clinics or doctors searching for an explanation for the
mysterious variety of symptoms that plagued her. During this period, she saw an
internist, an ear, nose and throat specialist and even a cardiologist. Their
diagnosis: Raynauds phenomon with possible Scleroderma involvement.
Tylen was
having a significant skin tightening and her ANA (antinuclear antibody) level
was extremely elevated to 1,280, normalcy being around 40. But the lady is a
fighter. In Tylen's case her normal size 5 ring finger got to be a size 8
suddenly, and her fair complexion became quite tan.
Tylen now
works parttime as a spokes person for Playboy. "Of course it's scary"
said Tylen (a very positive person) to this reporter, “only time will tell,
it's the systematic form of the disease.”