Jane: the girl living with MELAS
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- Опубликовано: 27 май 2016
- Diagnosed with MELAS, a rare degenerative disease that affects the brain, nervous system and muscles, 29-year-old Jane Tan is now wheelchair-bound. Jane and her mother, Mdm Grace Chin, tell The New Paper about their experience with the medical condition, and the hope that pushes them on every day.
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A devoted, loving, syring mother and a beautiful, resillient daughter!❤
Thank you for sharing this video, for educational purposes it has helped me understand MELAS syndrome more thoroughly, I wish you and your family the best, and sincerely appreciate this posting to increase awareness of MELAS. Thank you.
Pubmed.gov has the research documents. it's the NIH's medical science data pool. Mitoaction.org and UMDF.org are for patients. J-mit is to educate doctors about MELAS Syndrome in Japan. ☮️
i cried watching this. jane, you're such an inspiration. in spite of everything that's happened to you, you're still so strong and positive towards everything. You make me want to be a better person.
Life is so short... and i really do hope that god could just help these ppl. Let them be much more happier
This breaks my heart knowing i, my sisters and my mam and her family have this disease. I was diagnosed age 6 and i am now 18 and have watched this disease take over my older sisters and mother and i am very scared of what the future holds for me. I dont want this to happen to me. So far i only have hearing loss and small stature. I hope there is medication or a cure someday soon 😟
L-argine dialates small blood vessels in the brain. and prevents brain damage if given an IV treatment of L-Arginine for 2 hours twice a day for a week if a MELAS syndrome stroke like episode does occur, the L-arginine IV has to be given within 3 to 6 hours after the onset. MELAS Syndrome stroke like episodes. MELAS syndrome stroke like episodes typically feel like migraine headaches or a half of your brain headache. often with confusion, and slurred speech and half of your body will feel weak. It's a bad disease to have. I know it well. i have MELAS syndrome, too.-j
there's L-arginine. it's what i take. for my MELAS syndrome. it's important to take it daily to prevent Stroke-like episodes. And if you have a Stroke-like episode get an L-arginine IV within 6 hours or less. Vitamine E acts as a substitute for L-arginine. L-arginine dialates small bloodvessels in the brain, allowing nutrients into the Mitochondria Deep in your brain's neurons. so L-arginine Prevents MELAS Syndrome's Stroke-like episodes and prevents Brain damage if a Stroke-like episode does occur. if you are in America please make an appointment with Dr. Enns at Stanford University Hospital in Pediatric Genetics. if in Japan, Dr. Koga at Kurume Daigaku Byoin/Kurume University Hospital was who i used to see. it's in Fukuoka Prefecture on Kyushu Island.☮️🖖
please take 5 grams of L-Arginine 4 times per day, and 500 mg of L-carnitine 4 times per day. and more CoQ10 than you can shake a stick at. and hope against hope that you're able to afford it. please assemble a medical team of an endocrinologist for MELAS Syndrome related double Diabetes, a Neurologist for MELAS Syndrome related epilepsy and MELAS Syndrome related Stroke-like episodes for which your Neurologist will need to keep L-Arginie IV bags for year as L-Arginine prevents MELAS Syndrome Stroke-like episodes & prevents permanent brain damage if one occurs, L-Arginine dialates small blood-vessels in the brain thus allowing mitochondria saving nutrients into the nooks and crannies of your brain & brain atrophy which leads to MELAS Syndrome related Alzheimer's-like dementia. MELAS Syndrome is an abbreviated term for Mitochondria Encephalomyopathy, Lactic Acidosis, Stroke-like episodes, Syndrome is plus alpha Double Diabetes, epilepsy, and it ends with Alzheimer's-like dementia and teeth falling out. and i'm sick and tired of people saying "oh my blood type is Be positive" i'm like gag me with a spoon. my blood type is oh negative. i could've been a universal blood donor, but the mtDNA mutation i have causing my MELAS Syndrome is also in my white blood cells. please learn how to meditate. it boosts the immune system, something super-strong, i survived Covid-19 in 2022. my highest temperature those 7 days was 37.1℃. 36.5℃ =98.5 F☮️🎶✨ The most we can ask for is reincarnation. Please read Jim B. Tucker's book Before: Children's Memories Of Previous Lives. Also please look at pubmed.gov for more details about MELAS Syndrome related double Diabetes and the prognosis. please also search pubmed.gov for Mitochondria Autophagy/Mitophagy, aka the cell's mitochondria recycling program. ☮️🎶✨stay smart. ☮️🎶✨use your brain, don't lose it. Sorry if i offended you. But i've had MELAS Syndrome since 2013. officially diagnosed with it in 2014 at age 36, 11 months after the onset. the older one is at the age of onset of most mitochondrial diseases, the longer one Lives with it. ☮️🎶✨
This physically pains me to watch. My mother was diagnosed with MELAS syndrome 7 years ago, when I was just 10 years old. My life was turned upside down and everyday it gets harder. My heart is with you and your family, as well as with others affected by this monster of a disease.
if she has it so do you .you get the desease from your mother
you may go deaf like me
This really broke my heart. I'm doing research on a new patient of mine who has MELAS as well, and thought I'd like to learn about how they live with this condition on a day-day basis. I only had the chance to get a glimpse of her for a few seconds, and I couldn't tell if it was her condition which predisposed her to look lifeless, or if it was how she was truly feeling. I can only hope that everything is going well for you Jane, and I hope I can manage my patient's disease and take care of her with the same love and compassion your mom had shown to you.
alcohol is mitochondria toxic so is smoking cigarettes. vegetarianism helps a lot. My older sister hasn't onset yet. i had my onset at age 35 but wasn't diagnosised till age 36. Our mother was misdiagnosed with Multiple Sclerosis and it took 2 years of testing to reach the vague diagnosis of mitochondrial disease. There are at least 24 differentmitochondrial diseases. it took my older's miscarraiges to get her to get genetic testing. Typically, MELAS Sydrome patients are geniuses when they're young. i used to be in MENSA territory IQ wise: or 148. but many MELAS Sydrome stroke-like episodes take they're toll: IQ: 118. in 2018. "Still Smarter than your average bear, Boo-boo. "- a Yogi Bear quote by Hanna-barara. MELAS Sydrome Stroke-like episodes aren't brain hemorrhages. Stroke-like episodes are only visible with MRI's. My counselor specialized in kid geniuses. i sort of was one. so she took me in at the recommendation
of Japan's MELAS Sydrome Specialist and Researcher. Many medications and medicines are mitochondria toxic. ditto with foods. MSG/Monosodium Glutamate is mitochondria toxic. it's hidden in food labels as "Natural flavorings" like in Doritos. People have to stop being so glutinous or "we're Never ever gonna survive unless we are a little crazy."-from Seal's hit Crazy ☮️🖖🎶
Thank you for sharing your story, so very similar to my friends Melas journey...
My sister was diagnosed with MELAS July 2018. She’s had a different experience than this. However, I see quite a few similarities
God Bless you Jane!
this video broke my heart my brother was diagnose with Melas Syndrome at the age of 17 he was close to finishing high school and one morning he woke up with a stroke and was left in icu for 4 months my brother was left blind and was not able to walk he lost hope in his self and always wanted to be left alone doctors told us my brother will only last 10 years I really had faith he would last more this year may 2016 my brother has past away from the disease Melas Syndrome I would like to tell you Jane to keep on fighting your such a strong girl honey and just keep on going forward in life
I definitely support Melas Syndrome 👆👆📿
I really don’t want to read the comments as I just found out my little brother 22 years old may have MELAS disease. One day he started getting random headaches , the next thing it led to seizures , after that we find out it’s 90% melas . He has a muscle biospy to do . I’m so sorry for janes lost
This just happened to my friend 42 diagnosed. She is having dementia after having a stroke in november after headaches . her mom passed away a few years ago and now wondering if this is why . noone knew about it with her. My friend did not even recognize me today so sad :( im hearbroken
Tell your brother to arrange bags of L-arginine IVs for his next stroke like episode. They need to be administered within 3 to 6 hours of the onset of a stroke-like episode. Tylenol (acetaminophen) and Asprins tend to be Mitochondria Toxic. and tell your bro no Alcohol and no cigarettes, they're Mitochondria Toxins.
And wear a mask and glasses and a hoodie to avoid Covid-19. Covid-19 is lethal to MELAS Syndrome. impaired immune is in our deck of cards.
-This is from a guy with mtDNA A3243G.
if you are in America, MELAS Syndrome is treated by the Muscular Dystrophy Association. or visit Dr. Enns at Stanford University Medical hospital. the wait to see him is usually about 6 months. Although Dr. Enns is in the Pediatrics Genetics Department, he does see adults with MELAS. ☮️🖖🎶live long and prosper. 🖖☮️🎶
beautiful
The CCs are way off on this. For anyone with MELAS Syndrome, here's what i take for it. 5grams of L-arginine granules 4x daily, 30 mg of vitamin B1 3 to 4x's daily. 500 mg L-Carnitine 3 to 4 times daily, 30 mg of CoQ10 3 to 4 times daily. if i lived in my home country i'd be dirt poor. But i was tested in Japan and Japan takes care of it's sick. i hear Sweden does too. it's where my ancestors come from. The ones that brought the MELAS Syndrome to America in our family according to my mother's family calculations of miscarriages and young adult deaths.
L-arginine dialates small blood vessels in the brain allowing nutrients to flow to the nooks and crannies of the gray matter and it prevents stroke-like episodes and L-arginine IVs prevent brain damage if a stroke-like episode happens to occur. Vitamin B1 is for cognition. L-Carnitine is for muscles although it's for my heart according to my MELAS Syndrome Specialist and MELAS Syndrome Research Doctor who is retiring next month or well he'll be redirected to international teleconferences with other Mitochondrial Disease Doctors. Muscle wasting is a part of MELAS Syndrome and is looked after by the Muscular Dystrophy Association in the US. Many Medicines and Medications are Mitochondrial Toxic they can range from Tylenol and Asprin, to Stenols/cholesterol Medications to Prozac and "All Psychotropics Show Signs Of Mitochondrial Toxicity" according to Nature.com The UMDF.org and Mitoaction.org are good websites for more information. But Pubmed.gov has the research information. Exercising and fasting can cause Mitochondrial Genesis which is bad for Mitochondrial Disease patients. The mutation in the Mitochondrial DNA prevents the Electron Transport Chain (ETC) from functioning. The ETC consists of 5 ETC complexes in the Mitochondrial DNA or the 2nd membrane of the Mitochondria. it's the citric acid cycle aka krebs cycle that converts 34 to 38 used ATP or 34 to 38 ADP molecules into 34 to 38 ATP molecules ready to be used for kinetic energy when a phosphate shoots off the ATP molecule and also electric energy cause an electron is lost when the phosphate separates from the ATP. ATP is adenosine triphosphate. But among Mitochondrial Disease patients like with MELAS Syndrome our mutant Mitochondria don't Citric Acid Cycle/Krebs Cycle, other functions like calcium signaling and Mitochondrial Genesis still function. Mitochondria Genesis is the reproduction of Mitochondria via mitosis. So the mutant Mitochondria spreads or increases. Because the mutant Mitochondria don't get recycled in Mitochondrial Autophagy/Mitophagy. Because the ParkinPink1 molecule won't bind to the Mitophagy receptor without Reactive Oxydative Species (ROS). ROS is like cellular rust. ROS is a by product of the Citric Acid Cycle/Krebs Cycle which is not done by the mutant Mitochondria. Treatments are just like a band-aid for a broken bone. Only the Netherlands has the courage to do the research for a cure. yeah, i've heard all the snooty comments before "you cannot research for a cure! researching DNA is playing God!" So if your God wants your child to suffer MELAS Syndrome He's not all that perfect. Sorry about that. There's CRSPR but it doesn't work for Mitochondrial DNA. Some New Zealand Researchers found out Mitochondria will go to the Cellular DNA and "communicate" with chemical signals. Please search "MELAS Syndrome cure Patents" for a little hope. There was one that used Vitamin K. and Something else called Zinc Finger where a Zinc bar molecule would bump into a Mitochondria and rake its outer membrane. And supposedly swap an atom or two with the Mitochondria DNA which is the inner layer or second membrane. Maybe they've come up with something new over the past 5 years since i last looked.
Is zinc bad for melas patients?
hello my wife since 2005 melas patient and now you have a treatment that you know the situation please help me thank you
I wonder... can anyone better explain to me why her mother doesn't show any sort of symptoms? Or why she only started exhibiting dramatic symptoms when she got older?
The Phoenix it is because this illness varies between cases even her aunt has it..I just depends on how many mitochondria are affected.
the mom could have only 5% of her mitochondria affected while her son about 50% or more, it is known as "heteroplasmy"
CC's are way off. they should've been "I'm Jane. I'm 29 years old." instead the CC's said 'I'm dead. i'm Amanda" i'm like who's Amanda? What's going on is Jane on L-Arginine (to prevent brain damage if stroke-like episodes occur and to prevent stroke-like Episodes)and L-Carnitine for her heart)? Only the Netherlands is actually researching for a cure.
when she said I'm Jane thought she said I'm gay