Another newpaper article today for CFS Awareness!

Discussion in 'Fibromyalgia Main Forum' started by pamj, Sep 1, 2006.

  1. pamj

    pamj New Member

    The other local newspaper in my town has a new story today on CFS Awareness, and the work my niece is doing. I'm so excited about how much the news is spreading!

    Here's what they wrote... parts of it are edited due to message board rules. I think they did a great job educating more people about CFS.

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    Melrose Weekly News – September 1, 2006
    Ashley D’Orlando’s (business) helps people with Chronic Fatigue

    How difficult would it be if all of a sudden you had a constant sleepy feeling, flu-like symptoms, a low grade fever, sore throat and swollen glands? If you had to lie down after taking a shower and experienced dizziness, cognitive difficulties, nausea, memory loss and would never feel fully healthy again?

    How amazing would it be if someone was to step up and create a project to raise money and awareness to help you and others in your situation?

    Pam Gobiel is suffering from Chronic Fatigue Syndrome, a chronic illness she was diagnosed with five years ago.

    What Gobiel’s 11-year-old niece Ashley D’Orlando has done is create an on-line business that sells witty T-shirts, golf shirts, mugs, note cards, and leisure apparel and raises awareness about her aunt’s illness, all the while raising money for Chronic Fatigue Syndrome research.

    The business is called (edited) and hit the internet at the beginning of June 2006. The web site and all its quirky graphics and sayings have been created entirely by D’Orlando. The name (edited), however, was inspired from a friend at school, she explained.

    So far she has sold $1,500 in merchandise and has had over 1,000 hits on her site. Ten percent of all proceeds go directly to charity and the rest of the money she has earned she puts into her college fund. She says she hopes to be a pediatrician some day.

    D’Orlando explained that her uncle had offered in the past to help her start a business if she ever had the interest and she took him up on it.

    She says that her favorite part of the business – aside from helping raise awareness about her aunt’s illness – is sharing her creativity. She likes coming up with different ideas and having the ability to turn that idea into a T-shirt or whatever she wants.

    D’Orlando is quite ambitious and very well spoken. In addition to her project, she is also helping build the Gobiel’s new addition on their home and is learning how to put up door frames. She also can cook, do her own laundry and is wonderful with babies, according to Gobiel. D’Orlando, she explained, is a great help to her; quite capable and a fast – and enthusiastic – learner.

    Gobiel’s life has been drastically changed by this disease. She can no longer drive, leave the house alone or participate in daily activities.

    Chronic Fatigue Syndrome (CFS) was first discovered in the mid-1980’s. Three to five times as many women carry the disease. The disease can leave victims bedridden. Even the most simple tasks like sitting up or talking can exhaust people with CFS.

    The DNA code in people with CFS is different in genes vital to both the immune and sympathetic nervous systems. A normal, healthy body can handle environmental, physical and emotional stressors. A person with CFS, however, does not have an immune system that adapts properly to trauma. Instead, the body succumbs to the regular “wear and tear that it should be able to biologically respond to,” according to an article in the September issue of “Bodywise”.

    Gobiel says that despite her limitations, she tries to keep a positive attitude and she feels this has happened so that she will learn from the experience. She says she will make the best of things and that it is nice to know she and her niece are helping people out there who have this affliction and not know about it.

    “Being able to spread awareness and being able to work with someone who has so much ambition and wants to help and do something important is the best part of this experience. I’m lucky to be this close with my nieces, and Ashley is learning by working with someone with an illness so she can overcome obstacles in her own life. We both (she and her husband) enjoy spending time with Ashley,” Gobiel concluded.

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    I feel very lucky to have Ashley as a spokesperson. She's smart enough to realize (as she says) "people listen to me because I'm a kid, it's not as interesting if a 40 year-old tries to tell them about their illness". Unfortunately, she's right... which is why she will keep going as far as she can to get us the attention we need.

    take care,
    Pam


    [This Message was Edited on 09/01/2006]
  2. findmind

    findmind New Member

    This is just wonderful!!!1

    From the mouths of babies...and young people...our future may be in their capable hands.

    Give Ashley a big hug from me! If only I were her age again.

    findmind
  3. pamj

    pamj New Member

    You've all been so supportive of this project :)

    It certainly has picked up steam! I can't believe it's only been 2 months, and it's received so much attention.

    If it takes a child to help spread the word, then we certainly have someone we can count on. Now we're using the two articles about her, and sending them out to get the attention of the larger Boston papers, and the TV news stations.

    Wish me luck!

    take care,
    Pam