The Top Ten Worst Diseases (Hell on Earth) started off as a lark out of
curiosity, but has evolved into a list that may help many people and their
causes.  The question was, what do people think are the worst ten diseases
in terms of pain, suffering, and chronicity.  At this point I am trying to
add a vignette to each
disease, an e-mail contact if someone is willing to be one, if there is a
newsgroup, and a foundation for help and support.  The diseases are not in
order, and the list is expanding beyond ten.  Send me vignettes, e-mail
contacts, newsgroups, and foundations if you have them.  I will try to
always end with the list with the humor entries.
1)  Interstitial Cystitis
        Interstitial Cystitis is a disease of unknown etiology that causes
severe urinary symptoms, starting as early as twenty years of age.  There
is chronic inflammation of the bladder, pelvic pain, and pain or
discomfort as the bladder fills.  These patients may have to urinate with
as little as 5 cc's of urine in the bladder and may wake up all night long
to urinate.  Some describe the pain as glass in their bladder or electric
shocks.  More than half of the patients describe pain with {*filter*}.
        Interstitial Cystitis Association
        P.O. Box  1553 Madison Square Station
        New York, New York  10159
        Phone:  212-979-6057
        Fax:   212-677-6139
2) Recurrent Respiratory Papillomatosis.  
        Many patients must undergo several hundred surgical procedures to
remove the growths from the airway so they can breathe.  My daughter was
diagnosed at the age of 25  months and was rushed to Mt. Sinai Medical
Center in NYC for emergency surgery to remove the growths that caused 99%
airway  
blockage.  We heard everything from asthma,  bronchitis, croup, post nasal
drip, to we were neurotic parents.  Her  second surgery at Mt. Sinai was
five days after the first.  The disease is recurrent and the growths grow
back.  Surgeries 3 through 11 were performed at Children's Hospital of
Philadelphia where
our surgeon's clinical nurse introduced us to two patients: a {*filter*}ager who
had undergone almost 100 surgical procedures and has barely a whispher of
a voice (a best case scenario) and a 6 year old boy with a trach who had
bronchial and pulmonary involvement, no voice, and was having surgery
every week to 2
weeks (after undergoing almost two hundred procedures).  What makes this
disease so devastating is that because it is caused by a virus (the human
papilloma virus) there is no cure, and no hope for recovery for
the patients who are suffering.  

Marlene Stern, Recurrent Respiratory Papillomatosis Foundation, 50
Wesleyan  
Drive, Hamilton Sq., NJ  08690  609-890-0502
3) vestibular toxicity or vertigo
        These people are always in a state of sea sickness with vomiting
and no balance.  Any motion will cause them acute nausea and vomiting.
There are people with this disorder who lay in bed all day and wish they
could get up and walk (they have no balance) to get to the kitchen and get
a knife and kill
themselves.  I have been told that Van Gogh may have had this and that is
why he cut off his ear (if anyone has details let me know).
4) Reflex sympathetic dsytrophy
        These people are in such severe pain that they are candidates for
morphine drips.
5) Chronic severe depression
        These people feel so bad . . . . (I need a vignette if anyone has
one)
6) rheumatoid arthritis
        The Arthritis Foundation is one contact for this disease.
7) painful peripheral neuropathies
        These can be seen in diabetes or metronidazole toxicity.  All the
peripheral nerves are sending pain messages all the time.
8) Chronic Fatigue Syndrome
        I know that there are support groups and organizations but have
not found them yet.
9) Fibromyalgia
        need info
10) Shingles
              need info
11) Arnold Chiari Type I with Syringomyelia.
              need info
12) Pryoluria
              need info, apparently a disease with an inability to absorb
trace minerals.
13) Life and Children
        Life--it is a {*filter*}ly transmitted fatal illness.
        Children--they are hereditary, if you've got them your ancesters
had them too.

I need to fill in the blanks with vignettes, e-mail contacts, foundations,
etc. if anyone has them, and coming up with more "worst diseases" is fine
too.  Perhaps a talk show will pick up the topic and give some of these
foundations a financial and publicity boost.
BH, MD

Of the top, these seem fitting! I have always thought that rheumatoid
arthritis and emphysema are the ones to avoid. But, I'll sure rethink your
list. Tic Doloreaux and Cluster Headaches...where are they? And, doesn't
everyone have #9? sometime? Bill Palmer, MD Also, the worry from HIV!
Terrible.

--
William Palmer
Anatomic Pathology Institute
Oakland, CA 94618

spondyloarthropathy,

 Could you elaborate on why the above is painful, chronic, and causes
suffering for the long term.  I know they are, I am just not familiar
with a lot of such cases.  I may put ankylosing spondylitis under the
general category of arthritis.

One of the most sad diseases that I have seen was Epidermolysis Bullosa
Dystrophica.
IMO this is one of the worst subtypes of Epidermolysis Bullosa.  These
patients have a defect in the anchoring fibers which bind the ba{*filter*}t
membrane of the dermis (i.e., the stuff that hold their skin one).  If I
remember they lack the gene for type VII collagen.

The condition is seen is little kid.  Their skin just falls off with very
minor trama and they have ulcers present throughout their life.  This all
results in "mittent" deformities  of the hand, as the skin of the fingers
slides off and then heals in such a way that the digits scar together.
Most of these people die of squamous cell carcinoma at a early age.

All very sad stuff.  I think that their is an organization that helps
people with this disease.

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  KB0DER (see you on 1296MHz,33cm,70cm,2m)

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Ankylosing spondylitis is an degenerative arthritic process that often
afflicts young people causing progressive total spine stiffness with eventual
fusion of the vertebrae.  There is no good treatment and no way to prevent the
progression of the disease over the years.  I have one patient in his early
twenties who can't move his c-spine enough to drive or even read a newspaper
normally.  It's horrible.

Andre Chen, MD