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My Mitochondrial Disease Journal

May 14, 2009 - 8 comments
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mitochondrial disease

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rare genetic disorder



I am 52 yrs old. I have a rare Mitochondrial Disease that I would like to share. Mito... what? This is what I am always asked when I try to tell someone what I have. Can you spell that? Again? How did you say that?

      For the ones that don't know what this is, I will first try to explain what Mitochondrial Disease is before I start on my experience with this Mito...  

     Mitochondria exist in nearly every cell in the human body, producing 90% of the energy the body needs to function. There are a lot of different mitochondrial disorders that cause the mitochondria to fail for some reason or other and therefore cannot convert the food we eat and the oxygen we breathe into the energy the body needs to live. This disease can be an inherited genetic condition, while for others the mitochondria can be affected by other enviromental factors.
     This disease affects the parts of the body that need the most energy to function correctly, such as the heart, brain, muscles and lungs. The affected individual may have strokes, seizures, intestinal problems, blindness, deafness, muscle failure, heat/cold intolerance, immune system problems, etc. When a person gets ill with a cold, flu, etc. they need to get the proper care right away as it will take them at least twice as long to fully recover. If not treated in time, it could result in a downfall (kidney, liver or brain damage,) from where they were before this illness hit. This person may never be the same as before the illness, death could even occur.
     There is no cure for this disease yet, but research is always being done to hopefully find one. There are medications and vitamins that are used to help treat the symptoms right now. People with this disease can live almost normal lives for years, or prgression of the disease could be short. This is mostly known as a child's disease, because a lot of babies born with a mitochondrial disease do not live long enough to become adults.
     Just in the last 15 to 20 years have doctors starting connecting a Mitocondrial Disease with Parkinsons and Alzheimers, and other adults that had been suffering for years with a wrong diagnosis were found to have a
Mitochondrial Disease. Some doctors are still reluctant to talk about this as a disease or even look into it for you. You just have to keep looking for the right doctor for you.

Now that I have explained what Mitochondrial Disease is, I do have my story to tell but I am going to have continue tomorrow.

Comments
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by Linda4348, Aug 17, 2010
I was diagnosed Mitochondrial Disease a few months ago. For years, I have been diagnosed with all sorts of problems, such as: Hypothyroidism, Antiphosphilipid anti-body syndrome, type II diabetes, Degenerative disc disease affecting spine, and hands. Osteoarthritis, Rheumatoid Arthritis, Lupus, high blood pressure, high cholestral, & GERD. I so totally understand what you mean when you say no one knows what you are talking about. When I was diagnosed APS, no one had ever heard of it. When I was hospitalized not one of the doctors had ever heard of it. WOW what a scarey experience that was. They chalked it up to Lupus and sent me home. The doctor that said I have Mitochondrial Disease said to me, "At least now you know what has been causing all your problems" See you in 6 months. That's even more scarey.

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by Joyful50, Aug 19, 2010
Dear Linda4348, Some people, drs included have no clue what we go thru on a day to day basis living like we do. Trying to deal with the fact that people think you are crazy half the time is hard enough then when you have them treat you like now that you know, it is all ok, is another. Don't they know that it is now only beginnng another road for you.
Do you have a place to get information if you need it? Let me know if you have any questions or just to vent, come on and vent.
Its okay.
Leslie

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by Joyful50, Aug 25, 2010
I am not having the best day today. Have not slept but 2 hours last night but am going to go to my daughters for the day today. I am starting to get low on energy a lot faster in the last 2 months. It is like things have started to progress faster for some reason. I have started to slow things down, do not watch my grandchildren as much anymore unless Grandpa is with me. I don't drive as much since I have had episodes while driving and had to call my son to come get me after pulling off the road. After 2 months, I finally braved it and drove the 4 minute drive to town to go to the library. But like my husband said, only if I felt 110% and I did.

I am starting to feel more like an invalid and I don't like it!

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by Joyful50, Aug 25, 2010
I just have to add a short memo tonight that I love my husband so much for being there for me all these 36 years and I know he will always be there no matter how bad things get in the future.

I am sure there are caregivers out there that have questions as to the best way to handle treatment of spouses, family members who are dealing with day to day health issues, pain for example. I am someone who is having to deal with learning to loose my independence as a 52 year old woman with an incurable disease that has been slowly taking over mine and my family's lives for 11 years. We still struggle with how to actually help each through this. It is a day to day learning process.

It is not only us but our children, our grandchildren, out parents and siblings also. Health is the biggest issue in our lives, and people do not realize this until it is taken away. Then it is too late. then it is too late.

But that is when we have to just Count our Blessings and Begin Each Day with a Grateful Heart. There is always someone out there worse off than me, I know that all you have to do is turn on the news and there you have it.

Joyful52


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by RedFlame, Aug 26, 2010
Hi Joyful,  

I had not heard of Mitochondrial disease until now but do know about Mitochondria and their importance to us.

I'm sorry to hear of your illness and struggle.  It must be especially hard when it is so rare and most don't know it exists.  

I am glad you are here.

Hugs,

Red

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by Linda4348, Aug 26, 2010
Hi Joyful,
You are truely blessed to have a wonderful husband. I also have a wonderful thoughtful and caring husband. I thank God for him everyday. We have only been married for 7 years, and he has had to go through most of this with me. He rubs my back every night before we go to bed. It's his little way of trying to make me feel better. Don't you just love that? I totally understand the losing energy part. I guess I'm still a little bit in denial. I think I can do it all, until I can't function anymore.
Two weeks ago, I  joined a support group in Western New York. We are having a "Energy for Life Walkathon" on September 11th, I have decided to become a team captain and our team name is "Linda's Miracle Makers".  I'm having a late start, but I plan to walk and to do anything and everything I can to make awareness for this horrible disease.
God Bless You,
Linda (Linda4348)

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by Joyful50, Aug 27, 2010
Thank you for your Blessings, same out you also. We are in this together you know. I am tired after spending 2 wonderful day at my daughters. She has 3 great children. They were so good while I was there. Hannah (4yrs) gave up her bed for Grandma. She was so excited. Hunter 2yrs, was trying to wake  me up at 5:00am. Ashley said he was standing in the doorway calling out Grandmaaa, Grandmaaa, I did not hear a thing. Baby Rachel, 8 months, just waves and jumps around whenever I come into the room.

That can make you feel better any time!

I will be recovering today though. It was worth it though.



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by Joyful50, Aug 31, 2010
Have not been sleeping to well lately. not sure why. no sleep does not do well for my Mito body. With husband on 2nd shift, I am pretty tired for the rest of the day after he leaves. This is when I should be getting things done around the house. Oh well, it will be here tomorrow. He has taken care of dishes and laundry, even made lunch before he went to work. I am so lucky.

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