Mitochondrial Disease Awareness Week 2015; Part 1

Why Should You Be Aware Of Mitochondrial Disease?

  • 1 in every 200 adults contain gene mutations which could cause the onset of a mitochondrial disease such as diabetes, Alzheimer's Disease, Parkinson's Disease, cancers and et. al. according to the National Institue of Health.
  • Every 30 minutes a baby is born who will develop Mitochondrial Cytopathy by the age of ten.
  • Late onset Mitochondrial a Disease is becoming more prevelant in adults ages 50-60.
  • The Mitochondria are responsible for producing 90% of the bodies energy over a life time to run critical organs like the brain, liver, stomach, pancreas, eyes, heart, kidneys, and muscles.
  • Mitochondrial Disease is more lethal than ALL the childhood cancers combined.
  • Most children with Mitochondrial Disease will not survive past their teenage years.
  • You have the ability to do something about it just by reading this article and following the recommendations provided below..

http://www.ncbi.nlm.nih.gov/books/NBK1224/#!po=30.6452

The Alpha: Beginning

That is where were are right now. This is the beginning of a rapidly evolving underfunded science which has the potential to cure many diseases in our society.

Mitochondrial Disease also effects the brain causing developmental disabilities. These disabilities include but are not limited to mental illness, autism and intellectually impaired more commonly referred to in layman's terms as mental retardation. Late onset Mitochondrial Disease causes Diabetes, Cancers, Alheizmer, and Parkinsons.

I know this because my beautiful son has suffered from this disease his entire life. He was born premature and the doctors kept telling me he was perfect. But he has mitochondria disease that is throughout his body. It was confirmed through skin and muscle biopsy when he was two years old. It is in his stomach, his kidney and his brain. It is assumed to be in his liver, lungs and heart. We live with it every single day in a world that does not understand this disease or Alex's plight let alone the challenges he faces. As a parent I want you to know he is perfect but has mitochondrial disease and I pray for a cure everyday all day long. You can answer my prays by participating in Mitochondrial Awareness Week. So that one day we may see the Omega of Mitochondrial Disease...A Cure!!

This is My Son, Alex, Who a Has Mitochondrial Disease

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Alex in The Hospital

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World Renown Expert Dr. Bruce Cohen on Signs & Symptoms of Mitochondria Disease

Living With Mitochondrial Disease is Better than the Alternative

What is it like living with Mitochondrial Disease if you are one of the lucky ones who were diagnosed young and are strong enough to survive?:

Your life is consumed like a blazing fire with specialists, procedures, tests, more tests, traveling to get the help you need. This year we have finally started flying which is much easier on Alex instead of an eight hour car trip on top of not one but perhaps two specialists' appointments.

Regimen is the key so every medicine has to be taken and on time. Diet and exercise are extremely important as well so Alex does not get to eat the processed foods other children his age get to eat. In many ways he considers this a deprivation and hates I will not allow him to eat fast foods like the rest of the world. He has to eat whole foods, fresh meats and is never allowed soda pop like his peers unless it is homemade soda which is not as much fun as the stuff from the can. He must exercise. Alex is not allowed to be a couch potato. He has to be careful to get enough rest and then when we are not traveling and maintaining his health he has home school.

In many ways he wants to be like every other teenager but he is not. He has autism too which makes it even more difficult for him to connect to the world. And his Mother, believes in teaching him. So no television but books instead.

When he is not consumed with all that he is taught, he has civic duty like helping me put this article together for Mitochondrial Disease Week for all the children like him, for the adults who will suffer a Mitochondrial Disease and for those who have lost their battle to Mitochondrial Disease. It is required of Alex so that he understands that he is not alone, so he helps the world to understand what he suffers; they could suffer. The goal is that everyone is aware of this disease so everyone can be helped and included.

Having Mitochondrial Disease is no longer to be alone but to understand we are all vulnerable to it.

Some of the Other Families

The Undiagnosed

There is this classification of individuals who have a constellation of systems but who are not diagnosed who are at particularly high risk of having Mitochondrial Disease. These are people who you might see on the outside seem completely normal but on the inside are suffering tremendously. The undiagnosed are not getting the assistance they need to have the best quality of life and preventative care. The can not get the educational or emotional support they need to battle this disease.

Because Mitochondrial Disease is not well know these people suffer tremendously. You have the ability to make the difference. You simply need to share this article. Talk to your friends and family about Mitochondrial Disease during Mitochondrial Disease Awareness week. The person you maybe helping may be your family, friend, coworker or neighbor. It really is that simple.

I had an advanced degree and I could not have imagined the world of Mitochondrial Disease before I lived in it. All I am asking of you is for this week to share this article and other posts I put up on Mitochondrial Disease so people are aware. So the family who suffers with a family member with Mitochondrial Disease is a little less alone tomorrow because you took the time out to educate yourself and those around you about Mitochondrial Disease.

There is a lot to know. I am not a medical expert and that is why I have left the expert's video up so they can explain it to you. I am just a parent of a teenager who has lived with this disease his whole life. You do not know the path but walk it with us. Please join us on this path for this one week and spread the word about Mitochondrial Disease because awareness begins with you.

Mitochondria Disease

Do You Know Anyone Who Has Developmental Disability, Autism, Cancer, Diabetes, Heart Disease, Obesity, Alheimzer or Parkinson's Disease?

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Alex (Off IV Therapy) While In The Hospital

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When To Suspect Mitochondrial Disease

Brain

  • Developmental delays
  • Dementia
  • Neuro-psychiatric disturbances
  • Migraines
  • Autistic Features
  • Mental retardation
  • Seizures
  • Atypical cerebral palsy
  • Strokes

Nerves

  • Weakness (may be intermittent)
  • Absent reflexes
  • Fainting
  • Neuropathic pain
  • Dysautonomia - temperature instability&
    other dysautonomic problems

Muscles

  • Weakness
  • Cramping
  • Gastrointestinal problems
  • Dysmotility
  • Irritable bowel syndrome
  • Hypotonia
  • Muscle pain
  • Gastroesophogeal reflux
  • Diarrhea or constipation
  • Pseudo-obstruction

Kidneys

  • Renal tubular acidosis or wasting

Heart

  • Cardiac conduction defects (heart blocks)
  • Cardiomyopathy

Liver

  • Hypoglycemia (low blood sugar)
  • Liver failure

Ears & Eyes

  • Visual loss and blindness
  • Ptosis
  • Ophthalmoplegia
  • Optic atrophy
  • Hearing loss and deafness
  • Acquired strabismus
  • Retinitis pigmentosa

Pancreas & other glands

  • Diabetes and exocrine pancreatic failure
    (inability to make digestive enzymes)
  • Parathyroid failure (low calcium)

Systemic

  • Failure to gain weight
  • Fatigue

Getting Diagnosed

I spoke to an inside source today that told me there will now be a hotline number which doctors can call if they suspect Mitochondrial Disease and while treating Individuals with Mitochondrial Disease. This hotline will give ordinary doctors direct access to Mitochondrial Disease experts. It is being rolled out this week during Mitochondrial Awareness Week.

That means for every person you reach they will have the opportunity leave the world of the undiagnosed and start on the path to being evaluated for Mitochondrial Disease so medical intervention and preventative care can be given at the earliest possible opportunity. It brings the Mitochondrial Disease Experts into the rural communities. This is a spectacular advancement from when my son was born when I would visit doctors and no one knew or had very limited knowledge of Mitochondrial Disease. I had to find doctors to treat my son who were experts in this field. Now your doctors will have access to a number to simply call and consult an expert in the field of Mitochondrial Disease Medicine.

Here is why your participation is so critical. We do not have a grasp on how to even track the undiagnosed. We know it is a large number but unless people are aware of the disease they can not even ask their child's physician or their physician about it. That is why awareness is so critical at this key juncture in time.

We Are Not Giving Up!!!

Recommendations How to Participate in Mitochondrial Awareness Week

Since you have read this far I will share the good news that you are already participating in Mitochondrial Awareness week. But there are a few more things I would like you to do.

1) Like and share this article. Talk with your friends, family and co-workers about Mitochondrial Disease as you maybe helping an undiagnosed person who is too afraid to speak up about their health issues. I do not understand everything about this disease either but if we can all just agree to start the conversation then we will be making tremendous strides.

2) Above is a Mitochondrial Disease Awareness Ribbon. Could you please proudly display it on your social media sites? For those who are battling this disease, for those who have lost their battle and to support these doctors and families who are eternally vigilant, dedicated and relentlessly pursue a cure for those who suffer this disease internationally.

3) Never surrender the idea that there can be humane life saving treatment for individuals with this disease. Follow me through this week as I have a lot of information I will be sharing with you about Mitochondrial Disease during Mitochondrial Awareness Week.

Thank You In Advance!!!

Mitochondrial Complexes

And Those Who Have Fought So Hard Deserve To Lie!

Alex and Captain Terry from Angel Flight.
Alex and Captain Terry from Angel Flight. | Source

One Of Alex's Friends

This Is Kevin Kim.  Kevin is a wonderful person who sees Alex not as a child with Mitochondrial Disease and Autism but as a human being who needs understanding and acceptance.  Alex appreciates Mr. Kim.
This Is Kevin Kim. Kevin is a wonderful person who sees Alex not as a child with Mitochondrial Disease and Autism but as a human being who needs understanding and acceptance. Alex appreciates Mr. Kim. | Source

What YOU can Due to Participate in Mitochondrial Disease Awareness Week

  • Like, and Share this article on all social media. Talk to friends, family and coworkers about Mitochondrial Disease Awareness Week and encourage their participation.
  • Post this Ribbon to your Social Media & blog sites in support of Mitochondrial Disease Awareness Week.
  • Take the one week odyssey into the world of Mitochondrial Disease by following my posts just for the week of Mitochondrial Awareness..
  • Never give up the belief that all of these individuals can have and deserve a better qaulity and longer quantity of life.

© 2015 JT Walters

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