Posted: 3/24/2008 at 08:44 PM
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I have Mitochondrial Disease (a rare form of Muscular Dystrophy) and at this point, it is believed that Stem Cells are the only potential cure for it... Most children that get Mito die in childhood. often before age 6 with most forms of it. 80% of people diagnosed with mito die before age 18. Adult prognosis isn't good for most Mitochondrial diseases either since they often progress with most forms of it. and there aren't really treatments for it except giving a patient vitamins/supplements and for many forms specific diets since it's a metabolic disease. I'm afraid stem cell treatments won't be available in time for me because of how rapid my progression is. Stem Cell Therapy/Treatments are believed to have the potential to treat/cure a variety of diseases including: ¤ Cancer ¤ Type 1 diabetes mellitus ¤ Spinal cord injuries ¤ Muscle damage (Including Muscular Dystrophies) ¤ Heart damage ¤ Deafness ¤ Blindness and vision impairment ¤ ALS (Lou Gehrig's Disease) ¤ ...and many other diseases and conditions... Having Mito is not like other conditions that are currently "controlled" by medications but can be "cured" by stemcells... ________________________________________________ Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common. Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems. Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection. -taken from United Mitochondrial Disease Foundation website ________________________________________________ And here are sites/journals of families of children living withor that have died of Mitochondrial Diseses. (I believe there are 40 types of Mito- though often people may be diagnosed with multiple types). In most cases it is genetic which is why you'll notice somefamilies with multiple children living with/that have died from it... Alper's Disease: Drew Elliot and McKenna Lynn Olson Drew- 8/27/03 - 8/22/05, McKenna- 3/22/05 - 7/05/06 Leighs Syndrome: Cameron Mason Wiggins July 5, 2000~July 5, 2001 Elijah Jeramie February 15, 2003- November 25, 2005 Complex 1 and a secondary Long Chain Fatty Acid Oxidation defect Alexandria Complex I, III, IV and ANT with secondary FOD's : Annalies and Kristen Kocourek Caden Lane Williams Chloe Wyatt Cobetto Crouch Cytochrome C Oxidase Deficiency Haley Hartman Mitochondrial Cytopathy/COX DificiencyJustin K. Brubaker Maya Kristen, Stacey & Kieran Preston Kristen died 18th November 1992 at 8 weeks Mitochondrial Encephalomyopathy Autumn R. Smith Patrick Luskey Joshua Kilpatrick Mitochondrial Myopathy Heather died September 16, 2005 a week before her 3rd birthday Natalie Jean Eacrett December 30th, 1998 - May 6th, 2006 MNGIE (mitochondrial neurogastrointestinal encephalomyopathy): Kaitlin Vasilich died February 8, 2004 (age 18?) Jeremy Undiagnosed Mitochondrial Disorder (most are undiagnosed, they just know they are a mito!) Zachary and Sam Sam 5/9/97 - 3/3/05, Zachary died November 28, 2007- age 15 Skye Nicole Anastasia December 17,2003 - March 18,2006 Elena Kayley March 16, 2000 - September 23, 2000 Kira Bekker June 6, 2003 - January 4, 2005 Taryn Zipporrah & Asenath Mikaila Alex Kirkland Allen Kilbride March 6, 2001-December 2, 2007 Alec January 19, 2004- November 1, 2007 (this family then had a baby girl the day after their son died). Eliah Emily, Ashana, and Savanna LeGeyt Anna Kleckner died August 12, 2004 (baby) Aspyn Remar Block Nov 14, 2001 - July 15, 2002 Kevin Rhoan Wesdorp Lianna, Reilly and Tim Thorell Zach West Emma Byrne Hailey & Brenna Corey & Emma Brooke Hendley died June 13, 2005 Levi Robert Hoppe Family- 8 kids diagnosed with a mitochondrial disorder Kayley's mito angel friends- In Memory of more Mito Kids Without stem cell treatments, NONE of these children that are still living with it have a chance at a 'normal' childhood. that is the reality of life with Mitochondrial Disease- it IS progressive and degenerative... and there are SO many people out there living with other conditions or diseases that could be helped by stem cells... like Spinal Cord Injury survivors. They think potentially they would be able to walk again with stem cell treatment... Please remember this when looking at your options for political candidates this year and where they stand on the stem cell issue. Meet some Mito kids:
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I am with you on the need for Stem Dell Treatments for many illneses, and find your list emotionally devastating. Hope you find the strength to endure, and thank you for sharing this information with the community. Best wishes.
keep the faith! stem cell treatment, i hear, is going strong in Cali and overseas. they, the powers that be, must see the good it will do for us and how much money it'll save the goverment in the long run. sheeesh
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