Montel Show

[Guest guest]

I had the opportunity to watch Montel this morning and if anyone

gets a repeat airing of this show later today, I strongly encourage that you

tune in.

Today's show was about a professional model who was diagnosed with a rare

disease - sarcoidosis of the central nervous system. Her issues were about

her disorder, not EDS but what was important will follow in a minute.

First, let me give you some info about this so you get a better

understanding of what Sarcoidosis is.

Sarcoidosis is a rare multi-system, auto immune disease that is known for

its long remissions and wide variety of symptoms. Sarcoidosis symptoms vary

from person to person - no two are exactly alike. It is a granulomatous

disease in which inflammation may occur in lymph nodes, lungs, liver, eyes,

skin, joints, kidneys, liver and spleen, and other tissues.

Some patients may experience the following:

High urine output

Excessive thirst

Dry mouth

Excessive fatigue

Vision abnormalities

Headache

Joint stiffness

Chronic arthritis

Decreased tearing

Skin lesions and rashes

Enlarged liver

Enlarged spleen

Enlarged lymph glands

Shortness of breath

Cough

Fever

The symptoms are highly variable. Any part of the nervous system may become

involved. Involvement may be a single nerve, multiple nerves, or

generalized. It is often difficult to diagnose Sarcoidosis as signs may

mimic diabetes, hypopituitarism, optic neuritis, meningitis, tumours, or

other neurologic disorders.

What is striking about this disorder and makes it akin to EDS, is the fact

that it is difficult to diagnose and is often misdiagnosed as possibly many

things. Sound familiar?

During the interview, Montel touched on the pain that this woman feels

constantly, and the fact that she was on 2000 mg of morphine a day which

does as she described 'put a coat on it' but did not take it away. Montel

went on further to say that because of the amount of pain she is in, this

high dose which far exceeds that which a person who is addicted to morphine

for the purpose of a high would take, and that doctors need to listen and

treat their pain patients more effectively and that society should work to

understand that pain has to be treated appropriately!

I have to admit that I was taken aback somewhat to see a prominent figure

speaking about pain in a positive way in terms of treatment, but then half

of me says no - he understands more than most because he himself has

multiple sclerosis.

Anyway, the show today was an important one. The model had gone through a

long period of time where she underwent crippling chemotherapy, many tests

that largely proved negative initially, frightening life-altering symptoms

and lifestyle changes - and the potential for lost income, etc. All to come

out with a firm diagnosis and no one who really understands what to do for

her and to be welcomed into a disease where there is little or no research

going on.

If you had written to Oprah in hopes to get some coverage with Louise's CD,

or EDS in general, I urge you to write to Montel instead. When I

look at the host of talk shows out there now I see that some have chosen to

stay on certain paths and Oprah seems to be strongly into personal

empowerment, personal fulfillment, betterment, and understanding. This is

all wonderful for us all, but I can't see her focusing on a rare disorder

like EDS. Montel on the other hand, seems to be interested in bringing

publicity to important issues of society, family and individuals and perhaps

his show would be interested in doing for EDS what it did for Sarcoidosis

today.

The model had written a book about her ordeal and the show purchased copies

for all audience members, I can see the same being done for the CD!

Here is the link to today's episode:

http://www.montelshow.com/show/index.vep

If you want to share your EDS story with Montel you can do so here:

http://www.montelshow.com/show/email1.vep

It was a moving show and I hope it's not too late to catch it!

Jill