Karen Duffy

Discussion in 'Fibromyalgia Main Forum' started by Bruin63, Sep 12, 2005.

  1. Bruin63

    Bruin63 Member

    I am watching the Amazing Karen Duffy, who has a serve disease, that causes Pain 24/7, etc.
    She's doing interview's for HBO's "The Buzz"

    I am encouraged everytime I see her, because of the Horrible Illness she deals with.

    How many know who she is and what Disease she has?

    Just wondering, ;o)
  2. pepper

    pepper New Member

    According to one web site, "in 1995 she was diagnosed with sarcoidosis, a rare incurable disease that attacks the central nervous system.

    In 2000 her book "Model Patient: My Life As an Incureable Wise-Ass" was published."

    I too have been impressed by her upbeat attitude despite all that she has been through.

  3. Bruin63

    Bruin63 Member

    I'm so glad, that someone other than , me, is Inspired by her.
    Her book is wonderful, I had a hard time not crying, then not laughing, ;o)

    Bob Sagett's sister, had this and she did pass away, so I was amazed, that Karen Duffy had done so well.
    There was a movie called, "For Hope", and that was about Bob Saggets Sister. Very Sad movie. 5 hankies at least.

    Hope we all have a Painfree day,
  4. crillee

    crillee New Member

    It always gives me a great mental boost when I read about Karen Duffy.

    I also saw For Hope about Bob Sagets sister, but I believe she had scleroderma.
  5. moxiepup

    moxiepup New Member

    Hi: I thought just as she was getting noticed on TV in commercials and stuff she had a brain tumor. What is it that she has now? I'm def out of the loop!
  6. pepper

    pepper New Member

    has sarcoidosis. I copied this info from the sarcoidosis site. I know that it has nothing to do with CFS or FM but if anyone is interested in learning what this dear woman has learned to live with, you will be inspired too. As moxiepup mentioned, she is a beautiful woman who had become very successful when this hit her. I believe her brain, among other organs, was severely affected.

    "What Is Sarcoidosis?

    Sarcoidosis (sar"koi-do'sis) involves inflammation that produces tiny lumps of cells in various organs in your body. The lumps are called granulomas (gran"u-lo'mahs) because they look like grains of sugar or sand. They are very small and can be seen only with a microscope.

    These tiny granulomas can grow and clump together, making many large and small groups of lumps. If many granulomas form in an organ, they can affect how the organ works. This can cause symptoms of sarcoidosis.

    Sarcoidosis can occur in almost any part of your body, although it usually affects some organs more than others. It usually starts in one of two places:

    * Lungs
    * Lymph nodes, especially the lymph nodes in your chest cavity.

    Sarcoidosis also often affects your:

    * Skin
    * Eyes
    * Liver.

    Less often, sarcoidosis affects your:

    * Spleen
    * Brain
    * Nerves
    * Heart
    * Tear glands
    * Salivary glands
    * Bones and joints.

    Rarely, sarcoidosis affects other organs, including your:

    * Thyroid gland
    * Breasts
    * Kidneys
    * Reproductive organs.

    Sarcoidosis almost always occurs in more than one organ at a time...................

    Changes in sarcoidosis usually occur slowly (e.g., over months). Sarcoidosis does not usually cause sudden illness. However, some symptoms may occur suddenly. They include:

    * Disturbed heart rhythms
    * Arthritis in the ankles
    * Eye symptoms.

    In some serious cases in which vital organs are affected, sarcoidosis can result in death.............

    Sarcoidosis was once thought to be a rare condition. It's now known to affect tens of thousands of people throughout the United States. Because many people who have sarcoidosis have no symptoms, it's hard to know how many people have the condition."


    [This Message was Edited on 09/12/2005]
  7. pepper

    pepper New Member

    I believe died from scleroderma as crillee mentioned. I was surprised when I learned that because I did not know that scleroderma was fatal.

    Sharonk, do you know if she also had sarcoidosis? I did not see that movie.

  8. Bruin63

    Bruin63 Member

    I keep getting thoes 2 Conditions mixed up, the print outs I have in my files, are right, I read them wrong, and they are from the year"02", so I have been , hmm, Wrong, on NO, for a couple of years. eh? lol, don't tell the DH, I'd never live it down.

    It dosen't change what they had tho, very Serious conditions.
    I had been following Karen Duffy's story for years, and when I first heard that she lived in constant pain , I thought, maybe that is what I had, I was un-dx at the time.
    She was on the Oprah show at the time, in 97, I think, maybe earlier.
    She had, Scrcoidosis of the Central Nervous System and they discoverd that with an MRI. She did have Brain Lesions.

    I wasn't dx till 10-2000.
    I'll have to change my files now, lol, I try to be accurate, when it comes to these Conditions.
    I research, all disease's that involve Inflammation.
    they have that in common.

    I also thought at one time, that I might have Ankloising Spondilitis, which my Brother, who is in the NH has.
    His Spine is fused, from the disease, and I keep trying to find a decent pillow for him, but he has a Hump, and his neck and shoulders are out of sync, and it makes it hard for him to get comfortable.

    I was actually researching that when I came across what it was that Karen Duffy had.
    So many conditions have the same symptoms, no wonder it can drive a person crazy trying to figure it out.
    [This Message was Edited on 09/13/2005]
  9. Bruin63

    Bruin63 Member

    What Causes Scleroderma?

    Although scientists don't know exactly what causes scleroderma, they are certain that people cannot catch it from or transmit it to others. Studies of twins suggest it is also not inherited. Scientists suspect that scleroderma comes from several factors that may include:

    Abnormal immune or inflammatory activity: Like many other rheumatic disorders, scleroderma is believed to be an autoimmune disease. An autoimmune disease is one in which the immune system, for unknown reasons, turns against one's own body.

    In scleroderma, the immune system is thought to stimulate cells called fibroblasts to produce too much collagen. In scleroderma, collagen forms thick connective tissue that builds up around the cells of the skin and internal organs. In milder forms, the effects of this buildup are limited to the skin and blood vessels. In more serious forms, it also can interfere with normal functioning of skin, blood vessels, joints, and internal organs.

    Genetic makeup: While genes seem to put certain people at risk for scleroderma and play a role in its course, the disease is not passed from parent to child like some genetic diseases.

    However, some research suggests that having children may increase a woman's risk of scleroderma. Scientists have learned that when a woman is pregnant, cells from her baby can pass through the placenta, enter her blood stream, and linger in her body--in some cases, for many years after the child's birth. Recently, scientists have found fetal cells from pregnancies of years past in the skin lesions of some women with scleroderma. They think that these cells, which are different from the woman's own cells, may either begin an immune reaction to the woman's own tissues or trigger a response by the woman's immune system to rid her body of those cells. Either way, the woman's healthy tissues may be damaged in the process. Further studies are needed to find out if fetal cells play a role in the disease.

    Environmental triggers: Research suggests that exposure to some environmental factors may trigger the disease in people who are genetically predisposed to it. Suspected triggers include viral infections, certain adhesive and coating materials, and organic solvents such as vinyl chloride or trichloroethylene. In the past, some people believed that silicone breast implants might have been a factor in developing connective tissue diseases such as scleroderma. But several studies have not shown evidence of a connection.

    Hormones: By the middle to late childbearing years (ages 30 to 55), women develop scleroderma at a rate 7 to 12 times higher than men. Because of female predominance at this and all ages, scientists suspect that something distinctly feminine, such as the hormone estrogen, plays a role in the disease. So far, the role of estrogen or other female hormones has not been proven.

    Who Gets Scleroderma?

    Although scleroderma is more common in women, the disease also occurs in men and children. It affects people of all races and ethnic groups. However, there are some patterns by disease type. For example:

    Localized forms of scleroderma are more common in people of European descent than in African Americans.
    Morphea usually appears between the ages of 20 and 40.
    Linear scleroderma usually occurs in children or teenagers.
    Systemic scleroderma, whether limited or diffuse, typically occurs in people from 30 to 50 years old. It affects more women of African American than European descent.

    Because scleroderma can be hard to diagnose and it overlaps with or resembles other diseases, scientists can only estimate how many cases there actually are. Estimates for the number of people in the United States with systemic sclerosis range from 40,000 to 165,000. By contrast, a survey that included all scleroderma-related disorders, including Raynaud's phenomenon, suggested a number between 250,000 and 992,500.

    For some people, scleroderma (particularly the localized forms) is fairly mild and resolves with time. But for others, living with the disease and its effects day to day has a significant impact on their quality of life.


    I hope that helps to clear up what the 2 conditions are, sorry if I confused anyone.
    I have found a lot of other conditions that have connective tissue disease, with inflammation, .

    [This Message was Edited on 09/13/2005]

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