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Metabolic Support UK
United Kingdom
Приєднався 19 бер 2020
Welcome to the Metabolic Support UK UA-cam channel!
Metabolic Support UK is the leading patient organisation for Inherited Metabolic Disorders, supporting thousands of families worldwide.
Through our UA-cam channel, we want to bring you information about Inherited Metabolic Disorders, insights from patients and families living with Inherited Metabolic Disorders including what it's really like to live with a rare disorder, and tips from our team to help make your life easier and more comfortable.
If you want to learn more about what support we can offer you, please contact us directly on contact@metabolicsupportuk.org or 0845 241 2173.
Metabolic Support UK is the leading patient organisation for Inherited Metabolic Disorders, supporting thousands of families worldwide.
Through our UA-cam channel, we want to bring you information about Inherited Metabolic Disorders, insights from patients and families living with Inherited Metabolic Disorders including what it's really like to live with a rare disorder, and tips from our team to help make your life easier and more comfortable.
If you want to learn more about what support we can offer you, please contact us directly on contact@metabolicsupportuk.org or 0845 241 2173.
Introducing the "Living Well" movement
What does it mean to live well with a rare condition? Hear from Kirsty Hoyle (our CEO) and her son, William, who lives with Ectodermal Dysplasia.
Переглядів: 11
Відео
Think Ammonia, Save Lives. Etan's story.
Переглядів 9367 місяців тому
Hyperammonaemia is a state in which blood ammonia levels get dangerously high. This can cause seizures, coma, brain damage and even death. Kate Vinokurov tells her son's story. Etan lives with Ornithine transcarbamylase (OTC) deficiency which means his body can't get rid of the ammonia that builds up as a natural part of the metabolic process. The "Think Ammonia!" campaign from Metabolic Suppor...
Think Ammonia, Save Lives. Phoebe's hyperammonaemia story.
Переглядів 9417 місяців тому
Hyperammonaemia is a state in which blood ammonia levels get dangerously high. This can cause seizures, coma, brain damage and even death. Julia Campbell tells the story of her daughter, Phoebe's story of dealing with hyperammonaemia due to an inherited metabolic disorder (IMD) called Ornithine transcarbamylase (OTC) deficiency which presented later on in Phoebe's life. This story is different ...
Think Ammonia, Save Lives. Rory's Hyperammonaemia Story.
Переглядів 6 тис.8 місяців тому
Hyperammonaemia is a state in which blood ammonia levels get dangerously high. This can cause seizures, coma, brain damage and even death. Sophie Hawker tells her son Rory's story of experiencing hyperammonaemia due to an Inherited Metabolic Disorder (IMD) called Argininosuccinic aciduria and gives recommendations on why people need to "Think Ammonia!" when patients are deteriorating but presen...
Think Ammonia, Save Lives. Lucas's Hyperammonaemia Story.
Переглядів 6439 місяців тому
Hyperammonaemia is a state in which blood ammonia levels get dangerously high. This can cause seizures, coma, brain damage and even death. Charlotte Keys tells her son Lucas's story of experiencing hyperammonaemia due to an Inherited Metabolic Disorder (IMD) called Citrullinaemia and gives recomendations on why people need to "Think Ammonia!" when patients are deteriorating but presenting as an...
So...who exactly are Metabolic Support UK?
Переглядів 341Рік тому
Ever wondered who Metabolic Support UK are and what we do? Well watch this video to find out!
What is an Inherited Metabolic Disorder?
Переглядів 781Рік тому
Learn about Inherited Metabolic Disorders, how they're inherited and how Metabolic Support UK helps people living with these conditions.
Priority Four: Reducing health inequalities in NHS Highly Specialised Services
Переглядів 41Рік тому
Thank you for joining us for today's explainer of the England Rare Disease Action Plan! Today we delve into Action Six of Priority Four which is: To Reduce health inequalities in NHS Highly Specialised Services
Priority Four: Mapping the rare research landscape for gaps and priorities for funding
Переглядів 20Рік тому
Thank you for joining us for today's explainer of the England Rare Disease Action Plan! Today we delve into Action Five of Priority Four which is: To map the rare disease research landscape to identify gaps and priorities for future funding
Priority Four: Monitoring geographical access to drugs for people living with rare disease
Переглядів 14Рік тому
Thank you for joining us for today's explainer of the England Rare Disease Action Plan! Today we delve into Action Four of Priority Four which is: To monitor the overall uptake of drugs for those living with rare disorders and map geographical access to those drugs
Priority Four: NICE & the rapid adoption of new treatments for those living with rare disorders
Переглядів 12Рік тому
Thank you for joining us for today's explainer of the England Rare Disease Action Plan! Today we delve into Action Three of Priority Four which is: To ensure that NICE continues to support the fast adoption of new treatments for those living with rare disorders.
Priority Four: Gene therapies and other advanced therapeutic medicinal products.
Переглядів 10Рік тому
Thank you for joining us for today's explainer of the England Rare Disease Action Plan! Today we delve into Action Two of Priority Four which is: To Develop a strategic approach to gene therapies and other advanced therapeutic medicinal products
Priority Four: Rapid access to drugs for people living with rare disease.
Переглядів 17Рік тому
Priority Four: Rapid access to drugs for people living with rare disease.
England Rare Disease Action Plan: Priority Four
Переглядів 18Рік тому
England Rare Disease Action Plan: Priority Four
Priority Two: High Quality Research for Rare Disease
Переглядів 14Рік тому
Priority Two: High Quality Research for Rare Disease
Priority Two: Genomics Education Programme
Переглядів 13Рік тому
Priority Two: Genomics Education Programme
Priority Two: Rare disease training and education
Переглядів 18Рік тому
Priority Two: Rare disease training and education
Priority Two: Innovative Educational Resource
Переглядів 17Рік тому
Priority Two: Innovative Educational Resource
England Rare Disease Action Plan: Priority Two
Переглядів 16Рік тому
England Rare Disease Action Plan: Priority Two
Priority One: New approaches for undiagnosed rare conditions
Переглядів 14Рік тому
Priority One: New approaches for undiagnosed rare conditions
Priority One: Genomics England Clinical Research Interface
Переглядів 17Рік тому
Priority One: Genomics England Clinical Research Interface
Priority One: National Genomics Test Directory
Переглядів 47Рік тому
Priority One: National Genomics Test Directory
Priority One: Action for Newborn Screening
Переглядів 30Рік тому
Priority One: Action for Newborn Screening
England Rare Disease Action Plan: Priority One
Переглядів 23Рік тому
England Rare Disease Action Plan: Priority One
Explained: The England Rare Disease Action Plan
Переглядів 642 роки тому
Explained: The England Rare Disease Action Plan
Understanding Patient & Carers Experiences with Primary hyperoxaluria type 1 (PH1) and Lumasiran
Переглядів 2032 роки тому
Understanding Patient & Carers Experiences with Primary hyperoxaluria type 1 (PH1) and Lumasiran
Understanding Patient & Carers Experiences with Hypophosphatasia & Strensiq
Переглядів 2512 роки тому
Understanding Patient & Carers Experiences with Hypophosphatasia & Strensiq
thank you for sharing your story! stay strong! my son was born with severe otc, and was in the emergency room, blue and shaking from constant seizures, with ammonia level was 24, at age 30 HOURS!! after 3 day dangerous dialysis treatment, we considered liver transplant. at age 6 weeks, he had a liver transplant, and is doing amazing. i am looking for more information about recovery for the damage caused by the high levels of ammonia. its different than any other brain injury, and i wonder if anyone would know more about that.
Can you get disability for this?
I am forever grateful for your help in treating my TMAU. Dr okouromi, Your expertise and guidance have given me a new lease on life. Your tireless efforts to find the right medication and treatment plan have paid off, and I am now free from the symptoms that once controlled my life. ✅✅✅
Hello I'm writing from Calgary AB Canada, I Thank God for directing me to Dr okouromi on UA-cam who sent me herbal supplements and cured me from (TMAU) with his herbs in less than 3 weeks. GOD WILL BBLESS YOU..🥰🥰🥰🥰
I'm from Florida in US. If you'd like to interview me to further your online reach, I'd be happy to be on your podcast about TMAU and other health related topics. 😊
hey there, I'm curious if you were diagnosed with tmau or are you in the health field
hey there, I'm curious if you were diagnosed with tmau or are you in the health field
I am forever grateful for your help in treating my TMAU. Dr okouromi, Your expertise and guidance have given me a new lease on life. Your tireless efforts to find the right medication and treatment plan have paid off, and I am now free from the symptoms that once controlled my life.
@acceptinglife6491 TMAU. I'm into health but not in the field in traditional sense.
@Irenaherman-x6q How do I get hold of this Dr. Okouromi?
Yes, well done The same happened to us - we have a daughter with MMA and I guess if Ammonia had been tested for it would have been different story for her. Great campaign x
My story is too long to tell all. Between my mother, myself, my sisters and my daughter, we have had 6 male babies die early on after birth from OTC. Of the females that are carriers, some don't seem to be affected and some do. You are very lucky that your daughter was diagnosed and treated. Have you found out if you are a carrier?
Hi Sue, I'm really sorry to hear about the loss you and your family have faced. We are always here to listen, whatever the length of your story. Take care
It wasn’t easy living with embarrassment, bullying in high Shcl from friends, co-worker.I cured my Body odor & Bad breath smell with alternative herbs & gluten free diet protocol on DR.UWENBOHERBALHOME UA-cam page…🥰🥰🥀🥀🥀
Such valuable medical knowledge and only one medical personnel thought to check? Wow! Well I know I'll be telling all new parents! I would definitely contact all baby and parent magazines and blogs to get the word out!
It really isn’t that loud, and every single word is shown, so???
Hello. I am from Kazakhstan. I had a strong sweat odor (tmau). It helped me reduce the odor by 80% and sweat less. Probiotic (bacillus coagulans 6 billion cfu). This is not an advertisement.😊 
Good luck to you all for ever .
Ditto that. Sending out love, to you all. XXxxx
I really find it hard listening to you when your background music is so loud. You don't need it.
I agree
@@johnanddenisemarsh7708 @Bezuidenhout474 thank you both for your feedback 🙂
I’m sending you and Ethan best wishes and prayers.🫶🏼👍
I am praying for Ethan. 🙏🏻❤️
Jesus loves you
It wasn’t easy living with embarrassment, bullying in high Shcl from friends, co-worker.I cured my Body odor & Bad breath smell with alternative herbs & gluten free diet protocol on DR.UWENBOHERBALHOME UA-cam page…😓🥀🥀🥀
Such a rare and terrifying condition but you guys have done amazing!
I have Tyrosinemia Type 2.
Exactly the same story with my son but a different metabolic condition.
ua-cam.com/video/8HGVrxCUGEs/v-deo.htmlsi=OKlHVqh_TzV3giYO
It is my case
What if u smell and ur stomach always upset?its not tmau right? theres another disease that cause us smells
It wasn’t easy living with embarrassment, bullying in high Shcl from friends, co-worker.I cured my Body odor & Bad breath smell with alternative herbs & gluten free diet protocol on DR.UWENBOHERBALHOME UA-cam page…🎉🎉❤❤❤
Does he have breath issues too because I also get bad breath from lungs due to this condition.
My breath smells like fish sometimes metal and sometimes like garbage when I am hungry
Check my page out. I got something 4 TMAU
@@NT-qb7tdsame, specially when I eat a lot of protein.
It wasn’t easy living with embarrassment, bullying in high Shcl from friends, co-worker.I cured my Body odor & Bad breath smell with alternative herbs & gluten free diet protocol on DR.UWENBOHERBALHOME UA-cam page…🌿🌿🌿🌿🌿 0:01
Oh I thought I was the only one
It wasn't easy living with Trimethylaminuria, until I can across a testimony about DR OKOUROMI Alternative Herbal supplement which I tried in less than 3 weeks I got my life back. Totally Cured from Trimethylaminuria. 🍆🍆🍆🍆
Hello ! I have an 11-year-old son and since he was born we have struggled with GA1 every day, it is an achievement due to the condition of his disease, even more so than before, there was not so much information to be able to carry this, thanks for the video.
Alternative treatment by Doctor okouromi using natural herbal medicine cured me totally from TMAU. I stopped taking western medicine I'm full with Joy 😂😂😂😂
Alternative treatment by Doctor okouromi using natural herbal medicine cured me totally from TMAU. I stopped taking western medicine I'm full with Joy 😂😂😂😂
I SUFFERED FROM TMAU FOR 6 YEAR'S, FINALLY GOT CURED WITH ALTERNATIVE HERBAL HEALING AND BODY CLEANSER ON UA-cam, DOCTOR OKOUROMI TREATMENT WORK'S PERFECTLY WELL............
I SUFFERED FROM TMAU FOR 6 YEAR'S, FINALLY GOT CURED WITH ALTERNATIVE HERBAL HEALING AND BODY CLEANSER ON UA-cam, DOCTOR OKOUROMI TREATMENT WORK'S PERFECTLY WELL..........
God bless Dr okouromi on UA-cam, after years of Suffering from TMAU, I am totally free today after using the herbal medications I got from Dr okouromi I am so grateful sir 💯…..😊😊😊
Visit dr okouromi solution on UA-cam channel permanent treatment for Trimethylaminuria😘🥰😍🥰🥰😘
Visit dr okouromi solution on UA-cam channel permanent treatment for Trimethylaminuria🥰😍😘🥰😘
I only found out recently that I've been living with Tyrosinemia Type 2, I'm now in my 40s.
I shared it. THANK YOU SO MUCH ---be happy ❤. #1 spot to increase your channel's engagement P R O M O S M!!
p͓̽r͓̽o͓̽m͓̽o͓̽s͓̽m͓̽ 🌈
Hiya, has anyone heard from Daniel recently? His UA-cam channel is empty. Hoping he will speak at RareFest!
What happened to his channel?
Can you tell me what's the importance of exercise great interview Thank you
Contact Dr Isibor on youtube today and be free from Tmau , get his Alternative body cleanser and see the positive change in less than 14 day's
My success stories started with the use of Alternative treatment and body cleanser, it wasn't easy found healing from alternative herbs
What herbs r u using?
I’d love to know what body cleanser and herbs you are using
Definitely is a struggle living day to day, but the relationships that you actually create are generally stronger. I'm just thankful to be alive, things could be worse.
What is worse than this??? This is a nightmare!
How are you? It causes homelessness and stalking/harrassment in my life.
@@NT-qb7td I apologize for the late reply, I believe everyone has their own struggles, and this disorder can be horrible and isolating. But I've learned a lot because of this, I don't know where I would be without it.
@@Marilyn-rb3hj I'm doing well, all things considered, I don't have any issue working thankfully. I have been harassed and abused for sure, people think they can do whatever they want to you. The best thing to do is get away from those people and know your value. Try to keep strong with proper diet, exercise, and positivity so we can all be placed back into homeostasis.
@@Talkingtoyself bless you and thank you.
I am finally able to get rid of my Tmau 😷 disease 🦠 problem with the help of Dr.Auchi on UA-cam channel, recommended Dr.Auchi natural herb 🌿 remedies to everyone who’s suffering from Tmau 😷 problem..ua-cam.com/channels/6tA16t1IlKx1bY93lc2rcg.html ✅✅✅🙏🙏🙏
From the perspective of a colleague of Lesley’s in the Committee for Orphan Medicinal Products (COMP) at the EMA: Converting a personal experience like that of her family’s into something as constructive and successful is amazing.
I applaud Peter and Leslie on the anniversary of Metabolic Support UK. From the beginning we at the National Organization for Rare Disorders (NORD) worked closely with the Greene's and this relationship has been very important over the years. Metabolic Support UK, under other titles in the early years, was essential to the passage of Europe's orphan drug legislation, and other health related concepts. Thank you Leslie and Peter!
Well done both of you - an inspiring account.
BRAVO Leslie and Peter!! Well done. What a wonderful synopsis of the entire history and future of rare metabolic disease . Best, Jess
So proud of everything you and the charity have achieved over the last 40 years and for many more years to come. Love you mummy and daddy ❤ My hero's xx
Very informative Peter and Lesley 😊. Congratulations on bringing awareness to this important cause. Your hard work has/is paying off 🥇 You have done a fantastic job!
❤️
After 2 weeks of using Dr.Auchi herbal medicine for my Tmau disease, it was cured. That was the reason I decide to let everyone know that Dr.Auchi herbal medicine worked for me in curing my Tmau because it is on UA-cam platform that I found Dr.Auchi✅
1. Low choline diet 2. Exercise 3. Probiotics - kefir , sauer kraut etc... 4. Supplements : zinc, vit. B2 5. Bandaids: charcoal , chlorofresh 6. Intermittent fasting 7. Eating less at night And most of all very important is Prayers to Lord Jesus Christ. He is our healer. These are the above list which help me deal with my TMAU.. it works!
Thank you for sharing your tips and we hope you're keeping well.
After 2 weeks of using Dr.Auchi herbal medicine for my Tmau disease, it was cured. That was the reason I decide to let everyone know that Dr.Auchi herbal medicine worked for me in curing my Tmau because it is on UA-cam platform that I found Dr.Auchi✅
What kind of God allows this kind of suffering? He is not real.
@NT-qb7td I've noticed that people with tmau you are more resilient then other. I have this and tbh made me driven when it comes to my goals.
@@judenhio-son9902 I have been strong for so long because I held onto hope that one day I would be free from this but I am starting to realize nothing is ever going to change and this is always going to be my life
Beautiful family Ma Sha Allah. Totally understand and relate to your situation as I too have a child with complex medical needs. May Allah Swt give your child aafiah and strength to you all as a family.
Hi Shameem, Thank you for your comment on our Breaking Down Barriers video. If you would like to take part in our series and share your story, we would love to hear from you, you can contact us via contact@metabolicsupportuk.org if you are interested. Best wishes, Jess, Metabolic Support UK.