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Monthly Mito Expert Series

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Brianna Couture

You may hear Brianna singing in local musicals or see her teach Tai Kwon Do to children. You may notice her lovely voice and her smile. You may notice the blackbelt that she wears at Tai Kwon Do. But you probably won't notice mitochondrial disease. Brianna was diagnosed with mitochondrial disease as an infant but has not let it get in the way of her dreams.

Aug 01, 2007 Comments: 5
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I don't want to be this sick kid; I want to be the NORMAL kid.

Kids

Jul 29, 2007 Comments: 0
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I wish the doctors could figure out what's wrong with me or my child. We have been feeling sick for so long and nobody seems to know what to do. How do we, as patients, learn to speak up and advocate for ourselves in these situations?
Jul 29, 2007 Comments: 6
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If Only There Was A GPS For The HealthCare System

Gwenn Schurgin O'Keeffe, MD July 2007

Jul 25, 2007 Comments: 1
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Normal Is In The Eye Of The Beholder

I shall be telling this with a sigh Somewhere ages and ages hence: Two roads diverged in a wood, and I- I took the one less traveled by, And that has made all the difference ~Robert Frost

As we travel through life, we carry with us a road map in our minds of what our life will be like.

Jul 01, 2007 Comments: 0
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"Taking a Cruise would be my dream vacation, but my children and I have Mito."

Some families find cruises a nice alternative to vacations on land. In general, the ships themselves are accessible and there are wheelchairs on board if you want to borrow one. Most ships also have disabled rooms. Many shore excursions are easy for the disabled to do and there is plenty of time to rest onboard the ship. There is always a medical staff on board the ship if needed also.

Jun 29, 2007 Comments: 1
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"But you don't look sick! Can you have a normal relationship?"

Sexuality plays a big part in all our lives: young and old, sick and well, and should not be ignored when we are afflicted with mitochondrial disease. Similarly, sexual education should not be neglected in children who suffer from this disorder. Knowledge of sexuality, a healthy self-esteem and adaptations made in our sexual relationships all play an important role in how we carry out our sex lives.

Jun 29, 2007 Comments: 2
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It's my fault - I passed this on to them. It's hard to have dreams or goals for the future because of the uncertainty…"

Jun 29, 2007 Comments: 1
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"Sometimes I feel like the nurse, the advocate, the case manager, the social worker - and nothing is left at the end of the day for my spouse."

Mito is a particularly difficult chronic illness for a partner (not to mention the patient) to understand. With its ill-defined nature and tremendous variety of health problems, the difficulty with diagnosis and uncertainty over the progression of the disease complicates matters. Some things to keep in mind and might help you and your partner are:

May 29, 2007 Comments: 0
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"I've lost my identity now that I can't work or go back to school"I was recently asked to share what was helpful to me when going to college with a chronic illness and decided to outline them below for others who may be facing some of the same challenges when starting college.We are going to visit some colleges that I am thinking of applying to. What should I look for when I go to visit the campus?

May 28, 2007 Comments: 0

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