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Doctors and genetic science have already
proven it to be a gene related disease.
Studies have shown it to shorten a persons life expectancy by 20
years on average.
Ichthyosis is defined as a multitude of individual diseases with
many characteristics and traits.
It is debilitating, causes a break down of the immune system.
Affects one of the bodies largest organs
Is the root cause for many other medical problems; bleeding,
infection, dehydration, immobility and suicide.
Yet, the Federal Government, State
Health Departments, drug companies and healthcare facilities
ignore patients who are presented with this condition, deny
medical benefits and do not consider it to be life threatening
and misdiagnose it every single day.
FACT: It is life threatening due to your bodies inability
to fight off infection, protect your immune system and rob you
of 20 years of a persons life expectancy. it diminishes a
persons quality of life drastically.
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When we were born,
we where the "catch of the
day" two small lively premature fish that should have been thrown back
into the water. We both have
hypoglycemia, and an astounding appetite and could never manage to gain
weight and suffer from dehydration very easily. I weigh in at a mere 135 and have never been over 140lbs,
my
twin is the same way. We are both left handed and I suffer from severe
allergies to food, insects and some medications. We both catch colds and
infections very easily and 70 degree's is freezing!
Through out our childhood and
early school days, having Ich kept us from a lot of school and extra
curricular activity. We were labeled and scorned by other children
constantly. No one wanted anything to do with us and avoided us at all
cost. We went many years changing bloody socks, having taped up hands and
at times not being able to walk or bend over. The scales where hard and
crusty and we both along with our mom would spend hours scraping and
soothing the skin, just to be able to move. When it got worse we would
have to go to a local hospital and literally get "wire brushed" in a huge
steel whirlpool vat. Our bodies had no hair and the
simple task of cutting a fingernail, toenail or just bending over was no picnic. Our
foreheads, face and eyelids would always be flaking and dry. Winters
where the worst time and are the worst months for anyone with Ich to deal
with. Of course living in the northeast was no help either, spending most
every February/March not being able to walk.
At a very young age, our mother
was determined to find a doctor who could treat us. We saw many and none
where ever really found that had a clue or solution for our ailment. But
one led us to an allergist as well as a good dermatologist. They were
located in a huge Medical Hospital with a college for learning in Albany,
New York. The only
difference in the treatment for me, was repeated testing to explore a possible link to allergies
and what relation it had to my skin problem.
After lengthy exams and many, many
needles up and down our arms and legs, it was mostly trial and error..
trying to determine what we suffered from and how to remedy it became a
daunting task.. After many
years of using prescription lotions and ointments we both found that all
of it was mostly "guess work" and no one really knew how to treat us. Although Ichthyosis is
not an allergy, it is an acute problem which complicates issues that arise
when suffering from allergies and may be the underlying cause, due to a persons skin
being the largest human organ which protects your body and controls
your immune system. Without constant care of our skin, we are always
sick and immobile. We found that staying away
from foods that de-hydrate, processed foods and medications that had lasting side affects, man-made chemicals,
such as lauryl sulfate, Dimethyl oxide and sodium chloride (used in soaps)
and using other maintenance procedures we could somewhat "manage" our disorder. And
understand that all of the added medical problems where the direct
result of having Ichthyosis.
..... Are all things related to living with Ichthyosis, did I mention suicide? Diminished quality of life?
Loneliness and despair.
During our teenage years there was
a period when we where placed on an all liquid protein diet, eliminating
processed foods and became all too familiar with prescription ointments, special bath oils, Keri
lotions and placed in body stockings. Our condition seemed to be controllable to the extent
that it was comfortable, but missing real food prevailed and we eventually
went back to eating normal food. I carried syringes of epinephrine,
antihistamines and Benadryl to
control allergic reactions and our skin condition prevailed.
I made reference to us being
"Fish" in the beginning....which for the most part is basically true to
the extent that "we" too need water. People with Ichthyosis are dependant on
moisture.....To relieve some of the painful affects of Ich and feel more
comfortable. We have gone many years buying every kind of lotion, potions and the
likes that claim to "heal" the skin. I think I have used just about
everyone there is known...Store bought, prescription and mail order. If I haven't..."they haven't made it yet"...lol.
Solution ?
I
think everyone with "Ich" can tell you that
moisture does help and when the humidity level is at it's highest, than
the more comfortable they are with their condition. You may have to
spend a lot of
time trying to moisturize your skin, but spend additional time on how to find ways
to retain that moisture along with what little your body is trying to
produce.
I have seen people post questions and concerns regarding the way Vaseline,
baby oil, mineral oil
and other applied lotions and oils stain their clothing and ruin most of it.
My clothing was being ruined weekly and it became very expensive in
itself.
If
available in your area, try natural glycerin. (not petroleum grade used for
lubrication) but the vegetable based. It is a little sticky and helps your skin retain moisture.
It has natural warming affect and I dilute with about 25% water.
You can buy
lotions with glycerin, but they don't contain enough to aid persons with Ichthyosis, they only offer short term relief. Also check to see if your
lotion has any type of man-made chemical, fragrance, or alcohol, if so,
get rid of it.
All of the
"over the counter" lotions on the market targeting people with
dry skin conditions
DO NOT
WORK AFFECTIVELY ON PEOPLE WITH ICH,
You need to get rid of it! or keep it for it's temporary
immediate relieving affect and suffer the long term affect of its
chemical properties.
| I have
been asked to remove the above statement several times.
Whereby I have requested documentation to prove otherwise
and I would gladly remove it - BUT have yet to ever receive
any. |
 There
is also a wide mis-perception that oil works. It may sooth and relieve
dryness in normal people, but people with "ICH" do not have normal skin.
Normal skin already has oil, so using baby oil, mineral oil or keri
would be of little benefit, aside from the immediate relief they may provide,
people with Ich do not have skin that will
retain oil, so all of your efforts are wasted. The oil that is applied
merely gets absorbed into your clothing, bed sheets, socks, and what
ever you touch.....because again, your skin will not retain it. And what
little oil your skin had, was removed by the oil you applied when it
soaked into your clothing, bed sheets or whatever.
I do not scrape, exfoliate
or soak for long durations. I used to...and boy,
I can't begin to describe the pain & humiliation of what that was
like on a daily basis. I wish this "disorder" on no one and if what I write here helps just
one person with "Ich",
than I have shared what I know and offered someone some relief to what can
be a lifetime of shame, embarrassment and a "monster" that will, as it did
me, get in the way of all that I did. Follow my
links above to learn about what I do on a daily basis related to
exfoliating, bathing and moisturizing.
Gym class, summer sports, swimming
in public, wearing long sleeve pants and shirts all year long, low self
esteem, always being sick & tired, dealing with bloody feet and scabbed
and ulcerated legs, unable to walk or bend over, work, no social life,
alienated from having close friends, embarrassed to go out in public at
times, frequent hospital visits, etc. I could
go on and on. Today I live with it and my routine, as just a part of life. It
is time consuming and unpredictable - I have days when all of my
attempts to treat it are to no avail, I will get up in the morning and
the minute I set foot to the floor, my feet crack wide open. I have days
when typing or doing a simple task, a finger will crack open, I have
days when I know I can't bend over - I can bend over, but I know by
doing so, I will experience excruciating pain from my skin being pulled
apart. The one thing I dread is having to yawn. It almost always splits
my lips.
 Another
very extreme therapy solution... is to go south. We went south for one whole
summer when we were younger just for that reason. Just about every single
sign of "Ich" diminished. And the more we
frequented the south, the better our skin became.
Of course this goes without saying that while
there we did still go through the daily ritual of moisturizing and
spending as much time as we could in the ocean....The Salt water has so
many benefits. And after time our moisturizing was limited, our sweat glands started to work,
hair follicles started to grow and desquamation was occurring naturally.
If your Ichthyosis, is severe. It would be well
worth it to get to a more humid climate and stay for several months or
even relocate there. It
gives your body a chance to understand itself and learn how it is supposed
to work properly, your sweat glands start working and your skin, which is
an organ; is given plenty of time to heal itself.
When
I was younger, there were many days during the winter months and
throughout most of the summer where I couldn't even walk, when walking
created nothing but pain and bloody socks. There where days when I used to
sit for hours and scrape myself raw to get rid of the thick scales. I
still have problems with the winter months, especially January thru
February here in the north, but not to
the extend I did when younger. I stayed away from friends and
let my condition shut me in. It gets pretty bad. My brothers condition is even
worse
and he suffers from split feet and bloody hands mostly all year long. He
is not as determined or conscientious as me.
Unfortunately, all of this is a very expensive condition, glycerin,
special soaps, taking numerous daily baths and having to replace
clothing regularly and losing work or not being able to work because of
it. The winter takes it's toll on my utilities as well, hot water and
having to maintain a warmer home. And having to moisturize all the time
doesn't make going out in the cold very pleasant.
 
Top Left: Scaling increases
considerably during the winter. Bending over or kneeling creates cracks
which sometimes bleed. Top Right:
Extreme thickness and scaling leads to bleeding and reaches a point
which makes it very difficult to walk
Today
I live with the condition, but with a much better
understanding on how to live with it, cope with it and treat it. I use
that term "treat it" loosely, there really is no acceptable treatment
here in the USA. My condition is real and there are many others who
share this same debilitating disease.
Lamellar Ichthyosis has one other side affect; studies show,
that people who
suffer with it uncontrolled will have on average, a 20 year less life
expectancy.
My Lamellar affects desquamation, wherein my skin does not have the
ability to shed naturally like normal people, so I have to physically
remove it. It goes through about a 14 day cycle.
I wish all of you the best if you
suffer from Ichthyosis and will help you anyway I can. Answer
questions, or offer support. The most important thing in your life is
your well being and to not let the "Ich" monster take it away from you.
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