2. Fibrosing Mediastinitis
3. Interviews

Sharon's interview

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How did all start?

My son had a persistant cough with vomiting & weight loss.

Do you already have a diagnosis? How long did it take you to get it?

Took a few months for a diagnosis.

For what medical specialties have you been treated? What has been the most useful specialty for your?

He saw a pulmonary & cardiology specialist. Stents helped for a bit but it was just a band aid to a bigger problem.

What has been the most useful thing for you so far?

Accepting what is & knowing it was not my fault.

What have been your biggest difficulties?

Dealing with the death of my son & how he, out of all these people, was diagnosed with such a rare uncureable disease.

How has your social and family environment reacted? Have your social or family relationships changed?

I have changed in many ways. For example material things are not what is important, it is who you have in your life that is. I have distanced myself from social functions & focused more on what is important to me.

What things have you stopped doing?

Blaming myself for what happened.

What do you think about the future?

I really don't think much aboit the future because we never know what will happen. All I can do is live for today & try to make a difference.

So far, which years have been the best years in your life? What have you done during them?

The best years of my life was raising my children. Making memories & watching them grow. Cody was my only son but I also have a daughter too.

What would you like to do if you didn’t have your condition?

Since I did not have Fibrosing Mediastinitis all I can do now is share my son's story to keep his memory alive.

If you had to describe your life in a sentence, what would it be?

I would say I am a warrior.

Finally, what advice would you give to a person in a similar situation?

Don't give up, don't stop talking aboit your disease, learn as much as you can & ask questions.

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