My life with mitochondrial disease - Shelley Beverley

[@hendricks6760]

My wife is going through this, she lost her hearing, scans show her brain shrinking, her eye lids droop, I have to feed her at times , she’s is only 41 years old. Thank you for sharing your life story.

[@sarasas3386]

How is your wife now? What treatment are you giving her?

[@hendricks6760]

@@sarasas3386 currently just exercise and nutrition. She was on different meds that treat tremors and Parkinson’s but they weren’t working. I believe there is something different about her this year, she seems a little stronger, we started light weight workout on her arms hoping it will help control her shaking. We’ll see. How are you doing?

[@sarasas3386]

This is for my son 35 years old diagnosed 4 months back. They have suggested for bone marrow or liver transplant he has mngie

[@hendricks6760]

I hope it all works for the best, what determined these suggestions, do they feel this may work, or help?

[@robynhope219]

I'm sorry, how did this happen?

[@ushapadminiV]

I am a doctor from India suffering from Myositis and bedridden now because of flare up.After hearing shelley speak I cried that how much her family has gone through and still she is very hopeful.She is really an inspiration for me

[@nodehead9475]

i am also from india and going through same symptoms of mayopathies.

[@sarasas3386]

How are you doctor? What treatment are you taking? Am a sufferer of mngie

[@ushapadminiV]

@@sarasas3386 I am still bedridden taking immunosuppressive medication and doing physiotherapy. The improvement is very slow.Praying to the Almighty

[@sarasas3386]

Have you undergine treatment like stem cell therapy or liver transplant?

[@ushapadminiV]

@@sarasas3386 no they are not indicated for Autoimmune myositis

[@HerbertMabalaneMakgopa]

Thanks Shelley for sharing your story. So sorry to hear about this! Mitochondrial diseases are often underdiagnosed. And I strongly believe that advocacy and support groups are better positioned to build public awareness of the diseases to improve patient lives. Strength to you and your family. May God be with you!

[@rrjackaroo]

Shelley, bravo for being able to speak so well in front of many considering u were suffering from the inside so badly. I’ve never heard of this disease but will read up on it.. Thankyou for sharing your story and u will remain in my thoughts…. Best of everything that life can offer Shelley to both you and your husband.

[@Nicky-fo8fn]

Thank you Shirley. I am diagnosed with mitochondrial melas. After my mother passed away. Finally realised after long suffering she had it as well her sister and her mother all had it. Whole family passed now. It is hard. Stay strong

[@ritafranco3020]

To those of you in the U.S. contact The Rare Disease Clinic in Atlanta,Ga where they are doing clinical trials.

[@jordanthomson8675]

Pointless I have a mitochondria disease and my doctor just found the name of my rare mitochondria disease 20 years after I first started seeing him just a name with germanys help too unless a doctor or a company has a real cure I suggest you don’t waste your time

[@lena5633]

@@jordanthomson8675 Can I ask which one? And your age. I’m trying to gage things for my daughter

[@davidkim2016]

Oh man...the amount of pain and trauma this family went through..

[@sonialoopy6769]

I didn't even think about how many issues can appear as a result of having mitochondrial disease. It is great that our world doesn't stay in the same place and develop very fast. More and more inventions appear that may really help people to recover from this or that disease, to conceive, etc. We just need to be aware of all the possibilities and opportunities and luckily this info can be found everywhere.

[@jibberoverjava]

If you can't participate in having a genetic influence yourself physically, you can certainly transfer your genetic traits by inculcating your values and ideals, your knowledge of your favorite things, your personality traits by demonstration since all these things are influenced by your own genetic inheritance. Babies even learn hand dominance by simply seeing their parents do things.

[@ohkay7418]

A friend is in his 70s and has just been diagnosed with mitochondrial disease i think he has had this all his life. Poor growth poor vision hearing and muscle strength but after a blood went sepsis because of a kidney stone his one eye started to droop after a muscle biopsy he was diagnosed. His mother died when all her system just failed and a cousin just died of als and fld.

[@ohkay7418]

I mean ftd

[@robynhope219]

Sorry😢to hear. I have Mito dysfunction due to lifelong and severe stress thru childhood trauma. I believe it is EPIgenetic, not part of DNA...therefore treatable.

[@cardiabardia439]

I remember doing a presentation in school of the third parent science, and how fortunate we as a society truly are after its discovery. I remember the teacher saying it was controversial, and I still cant wrap my head around WHY. We can let people have children without a ticking time clock disease, ones with their mothers smile or eyes, HOW are people making that controversial?

[@cardiabardia439]

@@keeda1223 that is still a scientific impossibility. All of what you listed. There are several factors that dictate viability and removing DNA sequences like you say will cause a "shift-mutation" which usually leads to inviability At this point, we cannot remove DNA sequences without ruining the zygote, period, and removing a chromosome(like Down's Syndrome's trisomy) is just as impossible. People think we can just plug in DNA sequences like they are memory cards...

[@amandabaker4496]

Well if you believe in God then chances are you believe he will judge the humans who tried to become Gods themselves. God is the creator we are imitators. We caused ourselves lots of problems over thousands of years then come up with “solutions” with worse side effects and feel smart about it. So sad.

[@cardiabardia439]

@@amandabaker4496 BIIIIGGGGG yikes

[@cardiabardia439]

@@amandabaker4496 I won't engage too much with you, cause youre a bot, but compared to history, this is the best time to live in. Some of the lowest crime societies have no religion at all, and more societies will lose religion over time. Its why we don't have anyone walking around worshipping Zeus or Odin. Its bound to happen, and forcing religion doesnt make believers, it makes atheists.

[@nodehead9475]

@@amandabaker4496 god made mitochondrial diseases humans corrected them who is better god or human. god(only an example he is not a dog) is like a dog who is peeing everywhere in the universe famine war diseases economics limitation of resources and humans are the only thing standing between god destroying everything and life get easier.

[@melodyblackhall6702]

I can understand the biological desire to have your "own child." I was diagnosed with mitochondrial myopathy (merrf type) in 1992 at age 12 following genetic tests and muscle biopsy. As someone with this disease and understanding when diagnosed that I would pass it down so chose not to have children. I'm not financially well off otherwise I would love to adopt because there r so many children already without parents. I've never understood the necessity to have a child who physically resembles u and stubbornness isn't a genetic trait, it's a learned behavior that can be passed down to a non biological child. I would never put my husband and child in a position where I knew I wouldn't be around to help raise that child. Best of luck to u and I hope u find some alternative method of having a family whether it be adoption or surrogacy.

[@fiona9088]

Studies have shown that with certain genetic snps exposure to the mycotoxins produced by mold can induce mitochondrial dysfunction. Because each person is different so are the affects. Organic acids test from Great Plains and a functional practitioner are, at present, the only way out.

[@FullTimePatient37]

3:28 so sorry for your loss 😢😢😢😢😢

[@FullTimePatient37]

8:58 you are insanely strong i applause you for standing and talking

[@kc7339]

I'm recently diagnosed. Suffered with symptoms since 2008.

[@jonathangraham6412]

What are your symptoms? How did they diagnose it?

[@kc7339]

Pain everytime i use a muscle is my primary syndrome. Eyes close on their own. Weakness in arms and legs. To yhe point my legs take me to the ground, but come back 15 min later. Shooting nerve pain. Muscle spasms. Loss of voice. It was as if a switch was flipped. One day ok. Next day I couldn't walk or even hold a glass. Went down hill from there. Muscle biopsy and genetic tests. Told the story of the dysfunctional mitochondria.

[@csittutorialsbyvrushali]

My 7 month baby boy affected by Mitochondrial DNA depletion syndrome. Please tell me any solution, treatment or medicine??

[@robynhope219]

Pls explain to me the difference between Mito dysfunction and disease. Ppl wrongly get them mixed up. I have adult onset Mito DYSFUNCTION, which is EPIgenetic...NOT part of the DNA sequence.

[@bouchraarrachidi]

My son have mitochondrial dysfunction he is 6 years but he have autism symptoms there is any medical treatment to help him i give him only vitamins to support cells

[@jeanne2b2b22]

I suspect an outside exposure triggered the genetic disease to unnaturally progress to death for mother and son to rapidly decline at the same time and died within 16 months of each other.

[@lolitaalmostgrown]

That’s an interesting point

[@trishparker1582]

It depends on the loading they have - one sibling may live decade's longer

[@robertbegeal3894]

My Neurologist said my mitochondria mutation most likely happened after my small pox and anthrax vaccines for my deployments. Said I had this like lava in a volcano that could not erupt for thousands of years until seismic event. The shots or deployment exposure were my seismic event.

[@monikasarna5389]

Please tell me any dr who treat this disease in india

[@H4me7215]

I am sorry you lost your brother n mother, just know they are looking after you, i believe.

[@FullTimePatient37]

6:12 OMG I'm so so sorry 😢

[@mandarkumthekar8565]

I hope she is doing well.I feel her pain.

[@q3mago]

Has someone tried pqq for mito disease ?

[@q3mago]

@lena PQQ is pyrroloquinoline quinone. It is sometimes called methoxatin, pyrroloquinoline quinone disodium salt, and a longevity vitamin. It is a compound made by bacteria and is found in fruits and vegetables. PQQ in bacteria helps them digest alcohol and sugar, which makes energy.

[@njrom2975]

So how is she now?

[@rrjackaroo]

Yes I’d like to know too…

[@janececelia7448]

I agree that you should be able to genetically select for a healthy baby, yet I don't believe that babies should be born with chores to do such as offering succor to a depressive woman with hefty health challenges. In the annuls of time there's never been an inalienable right to have children. Furthermore, bringing a child into the world who'll likely have to become its mother's caregiver, is unfair. Should this woman be able to carry a pregnancy to full term, though I doubt it, her medical condition would likely worsen dramatically through the stress of pregnancy, delivery and caring for her infant. Her reasons for wanting a child are understandable but selfish and lack insight. She herself doesn't believe she will live long but is prepared to abandon her child so long as this child shares her personality and mannerism so that her partner will always remember what she was like whenever he looks at the child they made together. It's a heartbreaking story for which I hope she's getting counselling. As she said, it's up to her and of course the lawmakers and ethics committee whether or not she should continue with the treatment and whether her health can tolerate the challenges.

[@cocojeffrey8502]

Yup, there is nothing wrong with adoption... a self centred narcissistic person who just wants to carry on their random genetic 'arts and graces' and is willing to risk a genetically modified baby...is one of the core reasons civilization is doomed.

[@yota1897]

Ia have mitochondrial dysfunction its very difficult i cant run and do sport its a hopeless .i hope there wil be a medicine .i pray to god for it .i would.pay anything for it

[@jonathangraham6412]

What are your day to day symptoms

[@bronni9178]

Be careful with the mRNA vaccines?

[@lolitaalmostgrown]

🤫 stop it

[@borealssb1384]

You do realize they passed away in 2016 when mRNA vaccines were not yet in use? Idiot