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The Many Faces of Mitochondrial Disease

Updated: Jan 9

My friends and family! I hope your all doing well! I have favor to ask of you! I need your help in taking my Mito video viral. As you'll see its addressed to The Ellen DeGeneres Show. The video has done very well since I posted it and I've been told the content is fantastic. But, I think it can do better with a little bit of a push. That's where I need YOU! Please repost it, share it, like it, comment on it, tell others about it and tag me in it! Whatever it takes! If it helps one person with Mito and the general public in understanding the disease then its a pretty good day! It should be very interesting to see how viral we can take it!


Thank you all and be well!


Hugs For Mito

www.hugsformito.org


Andrew W. Goldberg

February 15, 2015

As some of you may be aware, my dad, Michael, has fallen ill these past couple of years with what seemed to be an unknown disease that left him crippled at the prime of his life. In time, we've come to adjust, and eventually come to learn that he suffers from something known as Mitochondrial Disease, something that normally strikes those of younger age with horrible ailments. Currently there is no known cure for this disease, and I'd just like to share this video, to help get some awareness out there, kind of like what the ALS challenge sought to do last year. If people could share this, help get the word out, I'd appreciate it. Thanks.



Dear Ellen,


I hope this email finds you, your family and staff doing well!


I’m emailing this morning to ask for your help. I’m sure I’m not the first and probably won’t be the last. I’m hopeful that I will be the best and open up your eyes and heart.


My name is Michael Goldberg and I’m 50 years old, recently diagnosed in December of 2014 with Mitochondrial Disease after three long years. EXACTLY! I know you just asked yourself “What is Mitochondrial Disease”.


That’s my dilemma! Mitochondrial Disease is a rare disease that needs the attention of the general population so it becomes a household name like ALS, MS, MD, CANCER, etc. The very sad truth regarding Mitochondrial Disease is that babies, children & young adults are dying from it.


Mitochondrial deaths in children surpass all the childhood cancers combined. That’s the truth! Devastating! Mitochondrial Disease also affects adults like myself and we’re dying from the disease as well. Research is being done but not enough. Currently there are no cures for Mitochondrial Disease. A patient manages symptoms as they come on and hopes for the best!


I need your assistance in creating awareness and branding the disease! Please, help me help the children! I can see that you love children as much as I do so I hope my email appeals to you! Help me get Mitochondrial Disease on the map and save children in the process! You do amazing work for many wonderful charities. I truly hope that Mitochondrial Disease becomes one of them.


I’m enclosing an article that I wrote when I was first diagnosed and posted on Facebook. I hope you find it as moving as others seemed to! Feel free to friend me and learn more about Mitochondrial Disease! I’m also enclosing the link to an article that I found extremely interesting regarding the branding of Mitochondrial Disease.


Thank you for your time and consideration!


Sincerely,


Michael Goldberg


I HAVE MITOCHONDRIAL MYOPATHY/DISEASE


HUGS FOR MITO

HUGS (Help Us Give Strength)

FOR

MITO

(Motivate & Inspire To Overcome)


CONCLUSIVE DIAGNOSIS TODAY 12/1/14


I hope this announcement is one of the finest “think pieces” that I’ll ever write, and at the end of the day touch all of you in a very special way. It’s being written from the heart with lots and lots of love and I thank each and every one of you for taking the time to read it.


We all go through personal life experiences; heartaches and obstacles that ultimately define who we are as individuals over the course of our lifetimes. How we choose to deal with these life experiences say a lot about our personal character and make for the individuals that we are today.


So many of you have supported me over the past two and half years as I battle illness and what had become “the unknown”. Sometimes, when illness strikes there is no clear-cut reason as to “why and how come?" Both are very valid questions. Another very valid question is “what do you mean when you say that the medical community can’t give you an answer?"


Unfortunately, the answer isn’t always so crystal clear. The medical community with all its wonderful doctors and technology isn’t a flawless process. In my particular case it’s taken quite some time for a diagnosis but I finally have an answer as to why I’ve been so ill.


I apologize for using Facebook as my medium but we all know that SOCIAL MEDIA is the best means of reaching the masses. So many of you have expressed a deep interest in my well-being and I can’t thank you enough. The wait is finally over and the doctors know what the culprit is. A couple of months ago I put a very similar message to this one out there so I could keep you all apprised of my condition. Now that I have a conclusive answer and can post without feeling that its being done prematurely. My doctor has been treating me in the direction of “a particular disease" but I’ve felt SOOO lame for the longest period of time saying that “I just don’t know” what’s going on with me physically. Plus, and more important than anything else in my eyes is that fact that to many CHILDREN are suffering from this disease and there is so much more that needs to be done in the way of creating awareness.


The disease is called MITOCHONDRIAL DYSFUNCTION or MITO for short. MITO is the umbrella to some 40-50 classifications that exist. The classification that I fall under is called MITOCHONDRIAL MYOPATHY. Let me explain further. As my doctor explained today and I’ll try and do my best to duplicate, PICTURE A CIRCLE. A solid circle with no breaks. This circle represents a CELL. An individuals DNA is contained within that circle. I have breaks within that circle/MY DNA that lets a doctor know its MITOCHONDRIAL MYOPATHY. Now picture a circle inside of the first circle. This circle represents your GENES. I gave blood today so GENE testing can be done to determine the exact GENE that is causing the MYOPATHY/DNA BREAKS and will classify me into one of those 40-50 classifications. This process can take another 6-8 weeks. No guarantees! I hope I did you all some justice with my explanation? Its an extremely complicated process.


Those of you that know me best can vouch that I pull no punches and tell it like it is. Hence, my next tidbit of news. During a CT SCAN (the end of October) for this crazy cough of mine a 7mm nodule was detected on my lung. Typically, these masses are benign and pose no real problem. I'm sure it will be the same for me. At this time however, it's a wait and see game for the next 4-6 months to see if there is any additional growth. That will be determined with a new CT SCAN. If there is growth I have a problem! One day at a time!


MITO is the result of breakdowns in the mitochondria. Mitochondria are specialized compartments that are present in every cell of the body except red blood cells and are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When mitochondria fail, less and less energy is generated within the cell. Cell injury and even cell death can follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the individual in whom this is happening is severely compromised. THE DISEASE PRIMARILY AFFECTS CHIDREN, but adult onset is becoming more and more common. Every 15 minutes, a CHILD is born who will develop a Mitochondrial Disease by the age of 10.


Failure 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, swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual problems, hearing problems, lactic acidosis, developmental delays, extreme fatigue heat & cold intolerance and susceptibility to infection.


MITO presents very differently from individual to individual and is very difficult to diagnose. There are few doctors that specialize in MITO. I have been seeing Dr. Amel Karaa at Mass General Hospital and after numerous clinical visits, specialized blood testing in the way of DNA analysis, muscle biopsy and a host of medical professionals poking and prodding at me I now have my answer after two and a half years.


There are no real treatment or medications to combat MITO. Treatment consists of vitamin therapy and conserving "ENERGY". The goal is to improve symptoms, conserve energy and slow progression of the disease. This is accomplished by sustaining a comfortable environmental temperature, avoiding exposure to illness and ensuring adequate nutrition and hydration.


Some of the challenges of living with MITO are that it affects multiple organs, can affect multiple family members and can affect multiple generations. There is a lack of AWARENESS and UNDERSTANDING of the disease, which is why this announcement needs to be one of my best ever. I NEED to create awareness! Not just for MITO, but ALL DISEASE AND ILLNESS. As a society we need to rid the world of Cancer, MS, MD, MITO and the million other diseases that we’re all aware of, “AND NOT". I’ve been receiving quite an education and the “and not” part of the last sentence includes many “orphan diseases” which in layman terms means “RARE diseases” that affect a small part of the population.


MITO PRIMARILY AFFECTS CHILDREN as I stated earlier. CHILDREN! I want each and every one of you to really think about that! Families are continuously forced to expend their very limited energy to explain their disease, advocate for themselves and fight for services.


MITO can be an invisible disease. On a good day an individual may look fine and healthy. They have more energy and appear rested. On a bad day an individual with MITO may appear tired to significantly ill. They are obviously fatigued and/or have significant illness. Bad days often lead to regression and an individual may have difficulty returning to baseline. The disease is unpredictable. Day to day, hour-to-hour an individual can develop symptoms and their stability can be threatened. An individual can become symptomatic at any time in life despite the fact that it is inherited.


The prognosis for MITO is variable. Some individuals live a normal life and are minimally affected while others can be severely compromised. It’s completely individualized and the prognosis is unpredictable.


With all this said I want to be a champion for the cause because obviously it strikes close to home. I want to RAISE AWARENESS for ALL disease and illness in any way that I can. If MITO needs a face (AND I KNOW IT DOES FROM ALL THAT I’VE READ AND BEEN TOLD) then you can stamp mine all over it. I’m living with the disease and it would be MY HONOR and PRIVILEGE. I’m living a wonderful life and plan on continuing to do so. It may be with a few more challenges but my parents didn’t raise a quitter. I still have a lot to accomplish and there are many of life’s simple pleasures that I still plan to experience and enjoy. The bucket list is growing. Please, don’t feel sorry for me. I’m not feeling sorry for myself and self-pity is such a wasteful use of time and “ENERGY”, (NO PUN INTENDED). I’m OK, I promise! Move on and live on! Someone once told me, “life is meant to be lived and love is meant to be shared!


I have a great support system in family and all of you, my friends. Each one of you brings something very special and unique to the table. Don’t ever forget it! Believe in yourself and the difference that you can make in this world and “GO FOR IT”!


My biggest concern is for the CHILDREN. Children are sweet, adorable and the innocence in this world of ours that for ME makes everything all right. They need to be cultivated and groomed into mature adults and each and every child deserves that chance. A legitimate, fighting chance to grow up and experience all that life has to offer. First Steps, Confirmations, Baptisms, Bar & Bat Mitzvah’s, Driver’s Permit, Driver’s License, Dances, Proms, Graduations, Work, Relationships, Marriage, Children Of Their Own and the list can and should go on and on, NATURAL PROGRESSION. Get involved for the CHILDREN! All these kids want to do is fit in and be LOVED! Small ask if your polling me.


I encourage my fitness industry colleagues to work with children of MITO and other diseases. I promise it will be one of the most rewarding experiences of your life. A child with MITO may never make a single gain or ever return to a previous baseline. But, I can guarantee you'll bring a huge smile to some wonderful child's face as your gentle touch "energy" radiates through their body. YOU! YOU have the tools and skill set to keep these children going and giving the gift of LIFE! Think of a life’s work helping children? What could be more gratifying?


Please, let's not loose sight of the fact that adults like myself also suffer from this dreadful disease and we need YOUR help as well! Disease doesn't discriminate based on color, religion, economic status etc. It can strike at any time and with no rhyme or reason. Disease holds no prisoners. One day you're fine and the next day you're not! Trust me, I’m a living example! You don't choose disease or illness; IT CHOOSES YOU! Want to know what MITO looks like? It looks like ME! See the enclosed video’s below. Those videos were taken around July & October. For the record I truly thought I would have had a diagnosis shortly thereafter. Some hospital politics got in the way of that plan so here I stand before you today (OK, not quite standing).


This “think piece” (I’m not quite sure what else to call it) hasn’t come easily. It’s been months in the making. My MITO has progressed over time and I want to paint the perfect picture of what its like living with MITO. Many of you may "SEE ME" online liking your pictures, family activity, personal goals that you’ve accomplished, etc. ALL OF YOU are my links to the outside world along with all of these wonderful gadgets we call technology. Smart phones, computers, laptops, tablets, etc. At this stage of the game they keep me connected. What you “DON’T SEE" is that I’m dictating to my laptop. My hands don’t function the way they used to. My thought process and memory have both taken a hit. I have a constant headache that just won’t go away. I take 3 hour plus “daily" naps so I can function. I’ve lost most of the vision in my left eye and my right eye seems to be a little off lately. I always had impeccable vision. I walk with a cane and walker. I experience pain and soreness every minute of every day to the point where I just can't get comfortable. I have difficulty swallowing, each and every swallow feels like a sore throat. Every day life doesn't come to me as easily as it used to. I have to work much harder for the simple things. My mother and father worry every day about what the future holds for their baby! YES, I’m a pretty big baby!


Now that I have a conclusive diagnosis I can really delve deep into the cause and help a lot of people, especially the CHILDREN. I love the ALS challenge and everything it represents. In my humble opinion I think its absolutely brilliant. Pete Frates, keep fighting the good fight and congratulations on the birth of your daughter! You and the countless others with ALS, MD, MS, MITO, etc. are all amazing people and an inspiration to all. That includes myself!


I’ve come up with a challenge of my own and hope it does as well as Pete’s in creating awareness for MITO. I didn’t want to copy someone else’s challenge so I came up with one of my own with a little twist of Pete’s and the ALS Challenge. Sorry Pete, its just that good, LOL. My challenge is called HUGS FOR MITO, HUGS (Help Us Give Strength) FOR MITO (Motivate & Inspire To Overcome). I’m setting a lofty fundraising goal, SO PLEASE, my FAMILY, my FRIENDS, my FITNESS FRIENDS & COLLEGUES, etc. Whatever you can do is greatly appreciated! Watch my video’s below and the rest is up to all of YOU! You all know what to do! I’m also challenging those of you that love the ICE BUCKET challenge so much to do an ICE BATH CHALLENGE! So, HUG AWAY and GET WET! The choice is yours! I’m just going to sit back and look forward to seeing all your videos.


I want to thank each and every one of you from the bottom of my heart! Now share, share, share and donate, donate, donate! I’ve tried to make it as easy as possible below. I want you all to understand that NO proceeds go to me and that anything you do is a direct donation to HUGS FOR MITO. I hope you’ll all take the time to create some great videos and become a part of my team.


Take care of yourselves and be well!


MICHAEL

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