Shining The Light on Mitochondrial Disease with Guest Blogger – Gina Baker

One of my Facebook Forum members, Gina Baker, shared her story recently of living with Mitochondrial Disease. I was so glad she did as I knew very little about it and having a rare disease of my own, I am very keen to raise awareness of other rare diseases.

I asked Gina if she would mind sharing her story on my blog, in the hope that we could together, raise awareness of this terrible disease.

I am thrilled to say she said yes.

This is Gina’s story, in her own words. I thank her for allowing us into her world of pain and suffering, so that the light can be shone on Mitochondrial Disease.

Sam xx

Gina’s Story

Mitochondrial Disease Awareness is officially over, but I and other members of my family will continue to fight this battle for the rest of our lives. For the most part, medically unsupported because of lack of mitochondrial disease symptom awareness and education in the medical field. As with many “rare” conditions, doctors are only trained to recognize the most obvious cases. Most of us “don’t look sick” and our standard work ups look good.

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MY STORY

My story is similar to so many suffering from mitochondrial diseases. I became totally debilitated by it in the prime of my life at the age of 33. In the 26 years since then, instead of living, potentially, the most productive, fulfilling years of my life, I have struggled to just keep living. I vacillate between being nearly totally bedridden and being housebound.

From the age of 11 on, I, periodically, suffered from prolonged bouts of unexplained fatigue, malaise, and vague illnesses that were always attributed to a virus, the catchall diagnosis of the time. I missed a lot of school. So much so that for a couple of years of High School, I was threatened with failing, despite keeping honor roll grades, because of the number of days I was absent from school.

As I finished High School and entered College and then the workforce somehow I was able to push through and graduate both High School and College with Honors and excel at my job as a medical laboratory technologist. I guess most of it was just drive but, perhaps, some of my symptoms had abated to a degree.

The symptoms that were eventually diagnosed as mitochondrial disease – failure of my adrenal glands, thyroid, and pituitary led to my collapse in 1992. It would take eight years to be diagnosed with mitochondrial disease. In addition to profound, debilitating fatigue, muscle weakness and pain, and frequent episodes of lactic acidosis, since then I have also developed heart failure and breathing problems due to weak breathing muscles and diaphragm weakness and have been told by my doctors that I could end up on a ventilator.

In late June of 1992 my life changed almost overnight. I went from being a dancer who danced and taught classes 3 or 4 hours a day 3 or 4 days a week and a medical laboratory technologist working in a busy hospital that supported my “dance habit”, as my workmates liked to joke, to not being able to get out of bed and go to work.

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I remember the exact day I couldn’t get up – July 7, 1992. I had been on vacation for a week that was mostly spent in bed. On Monday, I did not know what was wrong, but something dreadfully was. I had never felt so profoundly fatigued and fearful in my life. My body just wouldn’t work.

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This disease destroys lives and families. It is multigenerational. The sick are often left caring for the sick as in my mother’s and my case.

My maternal grandmother suffered greatly from it with extreme GI problems and heart problems. My uncle spent the last 25 years of his life bedridden and died from it. My mother’s life and energy have been severely compromised by it.

I started having intermittent symptoms at age 11. I thought since I had no children, this life destroying, unknown until I was diagnosed, illness would end with me. However, that may not be the case. My siblings carry the defect from my mother. Their children can be affected and, at least, one seems to be. People remain undiagnosed in large part because of the lack of awareness among doctors, the lack of specialists in mitochondrial medicine and the difficulty of diagnosis and inadequacies in diagnostics.

I don’t think help will come for me in my lifetime, but I continue to advocate and take the fight for awareness to whomever I can for the next generations in my family. I do not want anyone else in my family to become a statistic of the dozens of children, adolescents, and young adults who die every day from this disease along with those of us who live such poor quality lives and die, agonizingly, slowly.

Gina Baker

 

If you’re looking for genuine support, care, understanding & friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic & complex diseases, who truly understand the daily challenges. A warm welcome awaits.

I’m also a Contributor at “The Mighty”. You can check out my published articles at My Author Page

I also write @ Blogs by Christian Women

I’m a member of  the Chronic Illness Bloggers Network,  the  Grace Girls Facebook Group and Salt and Light Linkup Group

If you would like to read a little more about my journey, here’s the link to My Story

Please click here to read our Privacy Policy

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WEGO Health Award 2018 Nominee

3 thoughts on “Shining The Light on Mitochondrial Disease with Guest Blogger – Gina Baker

  1. I have had the honor to meet Gina Baker. About four years ago or so in one of the Mitochondrial Support Group I had joined. I was just reading and learning about how brave Gina was even going through this horrible disease. I was 36 years old and was placed on hospices. For 2 months I had given up on myself and I was tired. But one day I posted about what I was going through. There was Gina supportive and encourage that if I was truly ready to go it was my choice. But encouraging me that we can fight this disease. She would be there to support me. Even though she was struggling and just had lung surgery I think 6mos before (Sorry my memory not to good). If it wasn’t for Gina Baker and her bravery and fight, loving support I would not be a live to today. She is a amazing woman!

    Liked by 1 person

    1. Oh Jennifer, what a beautiful recollection of Gina’s influence in your life at a time when you most needed it. I will pass your comment onto Gina as I know she will be so encouraged to read it.
      Thank you so much for sharing your story. You have been through so much and I can imagine the difficulties and challenges each day brings you.
      I think you are pretty amazing too. Take care, Sam xx

      Like

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