Tips/Tools for Living with Mito

Tips for Living with Mito

The following articles and statements are designed to help you navigate the world of mitochondrial disease. They are written by people living with mitochondrial disease - either in themselves or a loved one. The articles contain "how-tos" for different aspects of living with Mito. We hope they make your journey easier and help you know that you, too, can LIVE with Mito!

Click on one of the statements below to get started.

Parents & Children

Advocate
 "I wish the doctors could figure out what's wrong with my child. He/She has been feeling sick for so long and nobody seems to know what to do"

Kids View
"Don't you understand? I don't want to be a sick kid…I don't want my friends to be afraid of my tubes…I just want to be normal."

Parent & Patient
"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…"

Travel
"What CAN we do? How do we go on vacation with all this medical equipment?"		 

Adult Patients

Advocate
"I wish the doctors could figure out what's wrong. I have been feeling sick for so long and nobody knows how to help me"

Fatigue
"Exercise? I am exhausted by just sweeping the kitchen floor!"

Spouses
"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"

Sexuality
"But you don't look sick! Can you have a normal relationship?"

College
"I've lost my identity now that I can't work or go back to school"

Diagnosis
"Mitochondria...what's that?"

Supplemental Disability
Applying for Social Security Disability Benefits for Adults (courtesy of www.disability-benefits-help.org)
 

Travel

Resources
"We have to fly to get to our Mito doctor appointment - help!"

Overseas Travel
One woman's experience

Cruise
"Taking a Cruise would be my dream vacation…but my children and I have Mito."

Heat Tolerance
"My child or I don't tolerate heat very well - how can we survive the summer?"