'The ugly disease' hair loss and blotchy, red skin with breakouts.

"Feeling constantly cruddy" is the polite description of being a Cushie," Fedela says.

Then there are the other symptoms, those not visible on the outside. Fedela says the worst for her was the insomnia, the anxiety, the fear of abandonment and pain. The joints hurt, the muscles lose their mass and walking is difficult.

When Fedela was at her worst, she couldn't walk up the stairs, let alone cook or shop. She was as weak as a kitten, she says.

Her doctors at this time urged her to lose weight, giving medications that often made her sick in an effort to solve the problem.

(please follow link for the whole story)

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3/14/05 banded

Never give up. Never surrender.

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How are you doing Vines? I have not been keeping up on here. Hope you are doing okay. Thinking of you even if I am not here a lot. RAE

Hello Vines, I hope your feeling ok these holidays. Can you update us on how your doing? I am glad tosee you posting every now and then. Take care and I wish you all the best this Christmas!

VQ, kudos to you for not only fighting through your personal challenges, but also for surpassing them and becoming such an advocate and spokesperson for the condition. Many people would have allowed themselves to be beaten down by their struggles, but you have used yours to spread awareness and information. Keep being strong.

The more I learn about this disease (mainly from you, Vines) the more it occurs to me that thousands of women are probably suffering unknowingly.

This is such a 'stealth' disease - I'm sure it's very much under-diagnosed.

So keep posting about it, Vines.

Knowledge is power.

Hugs Crystal

Happy Holidays!