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Adult Patients

by GingerD

 What does quality of life mean to you?

One challenge when creating clinical trials for people with mitochondrial disease is the tremendous diversity that exists in our community. Even patients with the same genetic diagnosis may have different symptoms and varying degrees of severity.

May 09, 2016 Comments: 0
by Cristy Balcells
What are fatty acid oxidation disorders, and why are they related to mitochondrial disorders?

Join us this month on Friday February 5th, 2016 with Dr. Jerry Vockley, University of Pittsburgh Cleveland Family Professor of Pediatric Research and Professor of Human Genetics at the Children's Hospital of Pittsburgh of UPMC. Dr. Vockley is the Chief of Medical Genetics and Director of the Center for Rare Disease Therapy.

Additional areas of discussion include: 

Jan 25, 2016 Comments: 0
by Cristy Balcells

What is the impact of illness or infection on a patient with mitochondrial disease?

Jul 24, 2014 Comments: 0
by Cristy Balcells
Understanding the mechanisms of mitochondrial deafnessJoin us this month with Dr. Peter Kullar, Clinical Research Fellow at the Wellcome Trust Research Centre for Mitochondrial Disease at Newcastle University (UK) to learn about mitochondrial disease and hearing loss.
Apr 02, 2014 Comments: 0
by Cristy Balcells

Dysmotility: abnormal contractions of the bowel, which slows or impairs digestive emptying and may cause symptoms such as pain, nausea, bloating, diarrhea, constipation or vomiting. Dysmotility can be caused by abnormalities of the muscles of the intestine (myopathy) or by abnormalities in the nerves in the intestine which control the muscles (neuropathy). For children and adults with mitochondrial disease, dysmotility is common and can be due to muscle myopathy and/or autonomic nervous system dysfunction (dysautonomia).

Feb 27, 2014 Comments: 0
by Cristy Balcells
Edison Pharma’s partnership offers hope for Mito community

 

Feb 03, 2014 Comments: 0
by Cristy Balcells
Join us for the annual "Mito Town Meeting" on Thursday Jan. 9, 2014 at noon EASTERN time (9 a.m. Pacific). The annual town meeting is our way of kicking off the new year by sharing all that is planned for the year. We'll hear from volunteers and representatives from a variety of programs and organizations. This is the meeting to attend if you want to get involved or get informed!

 

Jan 06, 2014 Comments: 0
by Cristy Balcells

It's time to take charge of the many hours that we as patients and families spend in clinics, waiting rooms, hospitals, and healthcare provider offices. How can you get more out of every appointment? More importantly, how can you get what you need from those interactions?

Feb 21, 2013 Comments: 0
by Cristy Balcells
Join us for the annual "Mito Town Meeting," Friday, Jan. 4, 2013 at noon EASTERN time. The annual town meeting is our way of kicking off the new year by sharing all that is planned for the year. We'll hear from volunteers and representatives from a variety of programs and organizations. This is the meeting to attend if you want to get involved or get informed!

 

Importance of Community: Philip Borden, MitoAction Board President

Jan 02, 2013 Comments: 0
by Cristy Balcells

What should you do when you or your child is sick?

Being sick, even with a cold or a simple virus, is tough for most children and adult Mito patients. Many people with mitochondrial disease are "wiped out" when ill, and can take much longer to recover. Join us Friday December 7th, 2012 for an exciting teleconference with Dr. Mark Korson as we discuss what to do when a Mito patient is sick at home:

Nov 30, 2012 Comments: 0

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