MitoAction was just so instrumental to helping us through the hospital stay through the passing of our son. Kira showed up to the hospital and was so genuine and kind to my family. We could never say enough nice things about this nonprofit.
When I received my clinical diagnosis of Mito, I had so many questions. I was fearful and uncertain of how to handle all of the challenges mitochondria disease throws your way. I am so thankful for Mitoaction 411 because without it, I would have fallen into deep depression and felt totally alone. I cannot begin to tell you how helpful and wonderful this group is. The support and information I receive on a weekly basis has been invaluable for me to be able to cope everyday. The moderator of the call has a wealth of information, knowledge, and personal experience. She is so generous with sharing her time and resources and energy to help all of us navigate this very difficult and complicated disease. Thank you so much for this wonderful organization! God bless you
I first heard about Mitoaction through my doctor Dr. Fran Kendall. She said it was a wonderful support group that could help me navigate the twists and turns of this terrible disease. And boy oh boy, she was right! In this group, I have found wonderful support, incredible knowledge, as displayed by our moderator. Mary Beth Hollinger, and endless encouragement and tips from the other participants . This group has been an invaluable tool to help me along this journey. I am so thankful for it!
MitoAction helps so many families, it was great to see first hand the impact that was made directly to those who needed it.
MitoAction has been a huge support for our family through our medical journey. They are a great resource for medical information and offer a great phone support group .
Mitoaction is a great free resource for families facing Mito - a rare genetic disease. Since this disease is so rare, Mito patients rarely meet another person with mito and feel alone. MitoActoin has support group via phone, webinars, socials and other events that bring mito people together! They also have pages and pages of easy to understand info about this disease.
Amazing organization for resources and assistance!
I suffer from adult onset disorder of the Mitochondria. It developed suddenly and I began to lose weight rapidly. I was told the permanent malfunction of the cell was due to either a bacterial or viral infection, or exposure to an environmental or ingested toxic chemical. The breakdown of cell function was evident in a special fresh and frozen muscle biopsy performed by C.I.D.E.M. labs at Case Western University and Cleveland Clinic to explore function at the cellular level. Having “Mito” means the cells can no longer produce enough energy to keep body systems functioning. Every system is affected, and the brain being the most sensitive, suffers the most. Since the break is permanent, each time an affected cell replicates, it replicates with the malfunction. Therefore it is a degenerative, progressive disorder for which there is no cure. Mine has no specific name, just Complex III and IV, along with a fatty acid oxidation disorder. I take a cocktail of supplements which help tremendously and above all, “Listen to my Body”!
Since it requires extra energy for one’s body to rid its self of toxins, serious reactions may take place with exposure, such as:
1. Chemicals in the food chain, like pesticides, preservatives, artificial coloring, chemicals used before during and after fresh fruit or vegetables are sold will cause severe gut pain, skin rashes, joint pain and can cause muscle weakness, breathing problems, neurological malfunctions that mimic stroke symptoms, cardiac irregularities, inability to walk, swallow, read, speak, tremors, muscle twitching and severe intractable head and spine pain.
2. Toxins (pesticides sprayed for pests , cleaning supplies, beauty care supplies, perfumes, chemical lawn fertilizers, air fresheners, cigarette smoke, detergents, etc. ) from the environment cause similar symptoms, but usually include more severe rashes and vomiting.
3. Tap water used for showing/bathing has been known to cause severe reddening of my skin from head to toe, difficulty breathing and cardiac irregularities. The symptoms subside after anywhere from 15 minutes to 1 hour.
I have learned to manage this disorder by decreasing the man-made toxic load one encounters daily, as follows:
1. Buy only organic food, vegetables and fruit from farmers I know. Drink triple filtered water and raw milk as well as organic certified juices. Smoothies save my body energy and are packed with dense nutrition.
2. Make my own shampoo, body cream and cleaning agents from natural substances certified as organic.
3. Use triple filtered water from tap to drink and double filtered to bathe.
When toxins build up, either from the cells inability to clear or a build up from unavoidable environmental agents encountered, I become too weak to walk, speak, swallow foods, breath and my para-sympathetic nervous system goes haywire (dysautonomia). Increased fatigues, both physical and mental, also occur. In the past these symptoms required hospitalization. I had a port implanted in my chest, in order to gain venous access at home. This permits large amounts of IV fluids containing added supplements to be administered to help promote cell function and flush out toxins. This may be done 3 -7 consecutive days. I typically require this IV therapy two to three times a month. I also learned to make a mean smoothie when my gut decides to slow to a crawl, which has helped me keep my weight up.
Before I was correctly diagnosed, many physicians felt I had a mental illness. I requested a thorough psychiatric work up at a large teaching hospital. It showed mental function within normal limits. With the psychiatric component off the table, I was labeled with multiple misdiagnoses by at least forty different specialists at approximately six different medical institutions in three different states. I lost my health, my livelihood as a nurse and my spouse of 30 years left me. My retirement funds vanished as medical bills piled high. Life felt empty and destroyed. I had a choice to make. Live miserably or find a new purpose. Hospice helped tremendously and I helped them by supplying educational information from MitoAction. “In chaos is opportunity”, so I filled the void with advocacy for the mentally ill, the incarcerated, our environment and as a volunteer with MitoAction helping others understand this terrible disorder.
Avoiding toxins means never eating out or having a meal someone else prepared. It means never being around pesticides. It means being much more isolated from family and friends because toxic substances now surround us everywhere. Toxic off-gasses from my grandson’s new beach ball, or a new mattress topper, couch, rug, even pillows can cause symptoms to flair. I wonder if I am “the canary in a cave”.? Are there more of us “Adult Onset Mito” folks around because of what we’ve done to pollute our environment and food chain?
One thing I am sure of, without the support of MitoAction I would not have made it through the first few years. With their support and teaching tools, my health has actually improved, my weight is normal again and I am able to enjoy Tai Chi and Qigong at least a few times a month. Caring for myself under my doctor’s direction and the help of Hospice gives me a sense of control over my health and has kept me out of the hospital many times. For that, I am most grateful!
From day one when we first heard the word “mitochondria” in relation to our sweet child’s health, Mitoaction has been there. For support, for education, for connections... Mitoaction leads the field in patient engagement. We are very thankful for the willingness to share info on mitochondrial autism and for their mito 411 resource.
A great group of staff and volunteers!
Mitoaction is an organization that exists to help meet the needs of those with Mitochondrial diseases. These diseases are so rarely heard of that most medical professionals are ill equipped to adequately diagnose or treat them. Symptomatic patients often reach out to Mitoaction with questions and support needs and are then seamlessly routed to a number of avenues to meet their needs. Their online presence is robust; with a website that includes everything from available Doctors who treat Mitochondrial Disease, the latest up-to-date advances in research and trials and hints on how to navigate appointments. They offer weekly support teleconferences with topics that cover the needs of all those with Mitochondrial Disease.
Mitoaction offers a 24 hour hotline 'Mito 411', a message can be left and a volunteer returns the call to offer support and answer questions. The Executive Director authored the book 'Living Well With Mitochondrial Disease', a book that explains Mitochondrial Disease in an easy to understand fashion. Mitoaction also has a presence on Facebook with a membership of well over 4,200+ and growing. It is here that you are able to see their impact; with many questions asked daily and responses galore it is evident the need there is for this organization. They have provided information and empowered their members, and those members are now able to support newcomers in need. I can think of no better run organization than one who equips members to help others by pointing them to the tools provided by Mitoaction and the forums by which we can offer mutual emotional support while living with such a dreadful disease.
Hello, my name is Stephanie and Dr Fran Kendall is my doctor. I met with her in October of last year and received the clinical diagnosis of adult onset mitochondrial dysfunction. She told me of this support group and it has been an invaluable resource to me ever since. Because I had been sick for so long and puzzled about so many symptoms that I was , this group was a Lifeline for me! I remember the first time I called in I was so amazed at the compassion and knowledge of the hostess of the teleconference, Mary Beth Hollinger. She is incredibly knowledgeable of this disease and has such a heart of compassion . She and the group were so insightful and helpful and surrounded me with support and caring. I look forward to this Friday afternoon support group every week. You could say it's my lifeline! And the Physicians and researchers and developers thatMitoAction 411 features, gives us so much hope for our future as we deal with this disease. The people in the Mito community are so fortunate to have this wonderful resource! Thank you!
It was a long struggle to find the correct diagnosis for my health difficulties, so many doctors told me they didn't understand what was causing my problems. Mitoaction was my only support at the start as NORD and other foundations had no knowledge of mitochondrial disease. Knowing that at last I could speak with informed dedicated professionals and other individuals who could help me sort out the treatments best suited to my health issues saved my quality of life from a housebound, perhaps even bedridden, wife, mother, artist, to a functioning, contributing woman. When my local doctors struggled to address my complications, I could find the information they and I needed at Mitoaction. When my specialist's clinic closed I found assistance at Mitoaction. When new problems arise I can network with patients across the U.S. to knit a possible solution from the discoveries of medical facilities I can never reach. They keep me informed of new researchand progress of clinical trials, which I find so very encouraging. Thank you, Mitoaction, I can never repay you.
This has been a wonderful outreach and source for knowledge. With a disease with so many unknowns it's nice to have each other. Thank you.