Metabolic Support UK
Metabolic Support UK
  • Видео 83
  • Просмотров 17 735
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.
Просмотров: 8

Видео

Think Ammonia, Save Lives. Etan's story.
Просмотров 9197 месяцев назад
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.
Просмотров 9407 месяцев назад
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.
Просмотров 6 тыс.8 месяцев назад
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.
Просмотров 6379 месяцев назад
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?
Просмотров 341Год назад
Ever wondered who Metabolic Support UK are and what we do? Well watch this video to find out!
What is an Inherited Metabolic Disorder?
Просмотров 768Год назад
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
Просмотров 39Год назад
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
Просмотров 20Год назад
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
Просмотров 14Год назад
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
Просмотров 12Год назад
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.
Просмотров 10Год назад
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.
Просмотров 17Год назад
Priority Four: Rapid access to drugs for people living with rare disease.
England Rare Disease Action Plan: Priority Four
Просмотров 18Год назад
England Rare Disease Action Plan: Priority Four
Priority Three: Virtual Consultations
Просмотров 18Год назад
Priority Three: Virtual Consultations
Priority Two: High Quality Research for Rare Disease
Просмотров 14Год назад
Priority Two: High Quality Research for Rare Disease
Priority Two: Genomics Education Programme
Просмотров 13Год назад
Priority Two: Genomics Education Programme
Priority Two: Rare disease training and education
Просмотров 18Год назад
Priority Two: Rare disease training and education
Priority Two: Innovative Educational Resource
Просмотров 17Год назад
Priority Two: Innovative Educational Resource
England Rare Disease Action Plan: Priority Two
Просмотров 16Год назад
England Rare Disease Action Plan: Priority Two
Priority One: New approaches for undiagnosed rare conditions
Просмотров 14Год назад
Priority One: New approaches for undiagnosed rare conditions
Priority One: Genomics England Clinical Research Interface
Просмотров 17Год назад
Priority One: Genomics England Clinical Research Interface
Priority One: National Genomics Test Directory
Просмотров 47Год назад
Priority One: National Genomics Test Directory
Priority One: Whole Genome Sequencing
Просмотров 34Год назад
Priority One: Whole Genome Sequencing
Priority One: Action for Newborn Screening
Просмотров 30Год назад
Priority One: Action for Newborn Screening
England Rare Disease Action Plan: Priority One
Просмотров 23Год назад
England Rare Disease Action Plan: Priority One
Explained: The England Rare Disease Action Plan
Просмотров 64Год назад
Explained: The England Rare Disease Action Plan
Who are Metabolic Support UK?
Просмотров 1412 года назад
Who are Metabolic Support UK?
Understanding Patient & Carers Experiences with Primary hyperoxaluria type 1 (PH1) and Lumasiran
Просмотров 2002 года назад
Understanding Patient & Carers Experiences with Primary hyperoxaluria type 1 (PH1) and Lumasiran
Understanding Patient & Carers Experiences with Hypophosphatasia & Strensiq
Просмотров 2432 года назад
Understanding Patient & Carers Experiences with Hypophosphatasia & Strensiq

Комментарии

  • @westbutler2085
    @westbutler2085 7 дней назад

    Can you get disability for this?

  • @Irenaherman-x6q
    @Irenaherman-x6q 2 месяца назад

    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. ✅✅✅

  • @DonnaPerry-n8o
    @DonnaPerry-n8o 2 месяца назад

    Hello I'm writing from Calgary AB Canada, I Thank God for directing me to Dr okouromi on RUclips who sent me herbal supplements and cured me from (TMAU) with his herbs in less than 3 weeks. GOD WILL BBLESS YOU..🥰🥰🥰🥰

  • @danielleriversrealtorextra2705
    @danielleriversrealtorextra2705 3 месяца назад

    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. 😊

    • @acceptinglife6491
      @acceptinglife6491 3 месяца назад

      hey there, I'm curious if you were diagnosed with tmau or are you in the health field

    • @acceptinglife6491
      @acceptinglife6491 3 месяца назад

      hey there, I'm curious if you were diagnosed with tmau or are you in the health field

    • @Irenaherman-x6q
      @Irenaherman-x6q 2 месяца назад

      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.

    • @danielleriversrealtorextra2705
      @danielleriversrealtorextra2705 2 месяца назад

      @acceptinglife6491 TMAU. I'm into health but not in the field in traditional sense.

    • @danielleriversrealtorextra2705
      @danielleriversrealtorextra2705 2 месяца назад

      @Irenaherman-x6q How do I get hold of this Dr. Okouromi?

  • @emmaandrew1358
    @emmaandrew1358 4 месяца назад

    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

  • @Sue-bx4co
    @Sue-bx4co 4 месяца назад

    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?

    • @metabolicsupportuk4342
      @metabolicsupportuk4342 2 дня назад

      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

  • @MOoooo-ol1uu
    @MOoooo-ol1uu 5 месяцев назад

    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 RUclips page…🥰🥰🥀🥀🥀

  • @Bettinasisrg
    @Bettinasisrg 5 месяцев назад

    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!

  • @songbirds3712
    @songbirds3712 5 месяцев назад

    It really isn’t that loud, and every single word is shown, so???

  • @Султанжобасы
    @Султанжобасы 6 месяцев назад

    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.😊 

  • @DoreenGranger
    @DoreenGranger 6 месяцев назад

    Good luck to you all for ever .

    • @margarethume4407
      @margarethume4407 5 месяцев назад

      Ditto that. Sending out love, to you all. XXxxx

  • @Bezuidenhout474
    @Bezuidenhout474 6 месяцев назад

    I really find it hard listening to you when your background music is so loud. You don't need it.

  • @nancyjackson8886
    @nancyjackson8886 6 месяцев назад

    I’m sending you and Ethan best wishes and prayers.🫶🏼👍

  • @MarieJackson-sp3be
    @MarieJackson-sp3be 6 месяцев назад

    I am praying for Ethan. 🙏🏻❤️

  • @shawnajones1755
    @shawnajones1755 7 месяцев назад

    Jesus loves you

    • @MOoooo-ol1uu
      @MOoooo-ol1uu 5 месяцев назад

      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 RUclips page…😓🥀🥀🥀

  • @mattstagg9881
    @mattstagg9881 7 месяцев назад

    Such a rare and terrifying condition but you guys have done amazing!

  • @tudormiller887
    @tudormiller887 8 месяцев назад

    I have Tyrosinemia Type 2.

  • @saiqabano6896
    @saiqabano6896 9 месяцев назад

    Exactly the same story with my son but a different metabolic condition.

  • @christylopez3400
    @christylopez3400 10 месяцев назад

    ruclips.net/video/8HGVrxCUGEs/видео.htmlsi=OKlHVqh_TzV3giYO

  • @Elyselitteraturoglotte
    @Elyselitteraturoglotte 11 месяцев назад

    It is my case

  • @JolefeFlamenia
    @JolefeFlamenia Год назад

    What if u smell and ur stomach always upset?its not tmau right? theres another disease that cause us smells

    • @MOoooo-ol1uu
      @MOoooo-ol1uu 5 месяцев назад

      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 RUclips page…🎉🎉❤❤❤

  • @Ib90
    @Ib90 Год назад

    Does he have breath issues too because I also get bad breath from lungs due to this condition.

    • @NT-qb7td
      @NT-qb7td Год назад

      My breath smells like fish sometimes metal and sometimes like garbage when I am hungry

    • @ghostfaceangle8202
      @ghostfaceangle8202 Год назад

      Check my page out. I got something 4 TMAU

    • @Ib90
      @Ib90 9 месяцев назад

      ​@@NT-qb7tdsame, specially when I eat a lot of protein.

    • @MOoooo-ol1uu
      @MOoooo-ol1uu 5 месяцев назад

      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 RUclips page…🌿🌿🌿🌿🌿 0:01

    • @Hellthee
      @Hellthee 4 месяца назад

      Oh I thought I was the only one

  • @iliyasuattahiru
    @iliyasuattahiru Год назад

    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. 🍆🍆🍆🍆

  • @albabeatrizrivera1485
    @albabeatrizrivera1485 Год назад

    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.

  • @HaiderAli786a
    @HaiderAli786a Год назад

    Alternative treatment by Doctor okouromi using natural herbal medicine cured me totally from TMAU. I stopped taking western medicine I'm full with Joy 😂😂😂😂

  • @HaiderAli786a
    @HaiderAli786a Год назад

    Alternative treatment by Doctor okouromi using natural herbal medicine cured me totally from TMAU. I stopped taking western medicine I'm full with Joy 😂😂😂😂

  • @jigneshgamit5699
    @jigneshgamit5699 Год назад

    I SUFFERED FROM TMAU FOR 6 YEAR'S, FINALLY GOT CURED WITH ALTERNATIVE HERBAL HEALING AND BODY CLEANSER ON RUclips, DOCTOR OKOUROMI TREATMENT WORK'S PERFECTLY WELL............

  • @jigneshgamit5699
    @jigneshgamit5699 Год назад

    I SUFFERED FROM TMAU FOR 6 YEAR'S, FINALLY GOT CURED WITH ALTERNATIVE HERBAL HEALING AND BODY CLEANSER ON RUclips, DOCTOR OKOUROMI TREATMENT WORK'S PERFECTLY WELL..........

  • @WalterRana-m1g
    @WalterRana-m1g Год назад

    God bless Dr okouromi on RUclips, 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 💯…..😊😊😊

  • @jingebazza6547
    @jingebazza6547 Год назад

    Visit dr okouromi solution on RUclips channel permanent treatment for Trimethylaminuria😘🥰😍🥰🥰😘

  • @jingebazza6547
    @jingebazza6547 Год назад

    Visit dr okouromi solution on RUclips channel permanent treatment for Trimethylaminuria🥰😍😘🥰😘

  • @tudormiller887
    @tudormiller887 Год назад

    I only found out recently that I've been living with Tyrosinemia Type 2, I'm now in my 40s.

  • @randalgomez4522
    @randalgomez4522 Год назад

    I shared it. THANK YOU SO MUCH ---be happy ❤. #1 spot to increase your channel's engagement P R O M O S M!!

  • @averybruggeman607
    @averybruggeman607 Год назад

    p͓̽r͓̽o͓̽m͓̽o͓̽s͓̽m͓̽ 🌈

  • @medics4rarediseases-m4rd11
    @medics4rarediseases-m4rd11 Год назад

    Hiya, has anyone heard from Daniel recently? His RUclips channel is empty. Hoping he will speak at RareFest!

    • @Ib90
      @Ib90 Год назад

      What happened to his channel?

  • @biba350
    @biba350 2 года назад

    Can you tell me what's the importance of exercise great interview Thank you

  • @miajessica399
    @miajessica399 2 года назад

    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

  • @brendstiles9952
    @brendstiles9952 2 года назад

    My success stories started with the use of Alternative treatment and body cleanser, it wasn't easy found healing from alternative herbs

    • @brigithhii7751
      @brigithhii7751 Год назад

      What herbs r u using?

    • @N_NSIIMA
      @N_NSIIMA Год назад

      I’d love to know what body cleanser and herbs you are using

  • @Talkingtoyself
    @Talkingtoyself 2 года назад

    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.

    • @NT-qb7td
      @NT-qb7td Год назад

      What is worse than this??? This is a nightmare!

    • @Marilyn-rb3hj
      @Marilyn-rb3hj 4 месяца назад

      How are you? It causes homelessness and stalking/harrassment in my life.

    • @Talkingtoyself
      @Talkingtoyself 4 месяца назад

      @@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.

    • @Talkingtoyself
      @Talkingtoyself 4 месяца назад

      @@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.

    • @Marilyn-rb3hj
      @Marilyn-rb3hj 4 месяца назад

      @@Talkingtoyself bless you and thank you.

  • @aimeequaifes175
    @aimeequaifes175 2 года назад

    I am finally able to get rid of my Tmau 😷 disease 🦠 problem with the help of Dr.Auchi on RUclips channel, recommended Dr.Auchi natural herb 🌿 remedies to everyone who’s suffering from Tmau 😷 problem..ruclips.net/channel/UC6tA16t1IlKx1bY93lc2rcg ✅✅✅🙏🙏🙏

  • @kerstinwestermark6537
    @kerstinwestermark6537 3 года назад

    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.

  • @abbeymeyers2679
    @abbeymeyers2679 3 года назад

    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!

  • @katedurie5771
    @katedurie5771 3 года назад

    Well done both of you - an inspiring account.

  • @jessthoene997
    @jessthoene997 3 года назад

    BRAVO Leslie and Peter!! Well done. What a wonderful synopsis of the entire history and future of rare metabolic disease . Best, Jess

  • @bekig8514
    @bekig8514 3 года назад

    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

  • @Os_-tw4ot
    @Os_-tw4ot 3 года назад

    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!

  • @laporshafaceslife
    @laporshafaceslife 3 года назад

    ❤️

    • @pamelajob2261
      @pamelajob2261 3 года назад

      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 RUclips platform that I found Dr.Auchi✅

  • @jb-zq8vg
    @jb-zq8vg 4 года назад

    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!

    • @metabolicsupportuk4342
      @metabolicsupportuk4342 3 года назад

      Thank you for sharing your tips and we hope you're keeping well.

    • @pamelajob2261
      @pamelajob2261 3 года назад

      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 RUclips platform that I found Dr.Auchi✅

    • @NT-qb7td
      @NT-qb7td 11 месяцев назад

      What kind of God allows this kind of suffering? He is not real.

    • @judenhio-son9902
      @judenhio-son9902 9 месяцев назад

      ​@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.

    • @NT-qb7td
      @NT-qb7td 9 месяцев назад

      @@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

  • @shameemaktar613
    @shameemaktar613 4 года назад

    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.

    • @jessdoyle3972
      @jessdoyle3972 4 года назад

      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.

  • @maureenmorgan8188
    @maureenmorgan8188 4 года назад

    Before Sebastion I had never heard of his condition..Emma gives a brilliant overview and insight into living with this awful condition..