Is heavy weight lifting good or not for someone with this disease?
@CathPo9 ай бұрын
Excellente présentation! Je suis nutritionniste au soutien à domicile et fais régulièrement des évaluations dysphagie/ observation de repas à domicile. Nous avons à l’occasion des usagers atteints de dmop, ceci m’aidera grandement dans ma pratique. Merci
@vinaykolekar986910 ай бұрын
Dear brother and sister please pray for my healing and marriage as I'm long suffering from spinal muscular atrophy type 3 rare desease my name is Vinay I'm from India. Thank you 🙏🏻✝️
@gamaltaher971410 ай бұрын
Thanks
@gtgodbear6320 Жыл бұрын
I wish I could learn to edit. I'd like to show myself naked with privacy Shadows so people could see the extreme ravages of muscular dystrophy. I have bmd and doctor say it's the most extreme case of BMD they have ever seen. I can still walk but it should be impossible. My thigh muscles are completely detached from my knees. I shouldn't be able to lock my knees with each step.
@gtgodbear6320 Жыл бұрын
I used to have enlarged calves and enlarged triceps untill I got gastroparesis. I spent so many hours sick and dehydrated that my body ate away my enlarged calves and triceps. My triceps actually had a lot of strength instead of weakness. But they were very easy to strain/cramp up if used too much.
@gtgodbear6320 Жыл бұрын
I have Becker MD. It's the same as duchene's it just Progressive slower. My uncle and brother has DMD and i have BMD.
@Fashionpreneurondemand Жыл бұрын
I'm dealing with this still today over a year and half later . Please tell me your suggestions for this !
@jaxen12910 Жыл бұрын
Im in RJHS now when this video was made i was in grade 4
@CarlsRecorder Жыл бұрын
I know his sister !! 💗
@jeannettebotero8677 Жыл бұрын
Thank you so much.
@bonniewoods7162 Жыл бұрын
Looking good Stef. You're a strong & courageous woman, I admire you ❣️
@kos28000 Жыл бұрын
Merci pour votre travail
@anastasienkama12442 жыл бұрын
Merci de nous informer
@Brunorcap19872 жыл бұрын
Descobri que possuo este gene TNN, gostaria de mais informações para terapia!
@NesGameOfficial2 жыл бұрын
I m patient muscular destrophy
@MDCDMC2 жыл бұрын
Hi Adnan Sami, MDC has a number of support services and programs. What do you need help with?
@lcaster29112 жыл бұрын
There is a presentation on natural remedies for MD using pressed wood oils and certain plants. Can there be a collaborative work on this angle?
@leroyavila30882 жыл бұрын
I have had Becker’s myotonia congenita from as early as 5 and now I’m 60 panic attacks trigger the myotonia and potassium I’m the only one in the family to have it it’s autosomal recessive clcn1 mutation
@davidjones13932 жыл бұрын
NICE
@davidjones13932 жыл бұрын
THKS
@davidjones13932 жыл бұрын
THKS
@davidjones13932 жыл бұрын
THKS
@freddiecabrera21502 жыл бұрын
𝓅𝓇𝑜𝓂𝑜𝓈𝓂
@tocotrienol80082 жыл бұрын
more research on Heterozygous Missense mutations , distal myopathy
@MDCDMC2 жыл бұрын
Thanks for your comment. Our research team has taken note of it. :)
@tocotrienol80082 жыл бұрын
@@MDCDMC I have a very rare form of dystil myopathy how can I get help and support? My neurologist doesn't know much about my disease.
@MDCDMC2 жыл бұрын
Hello I can certainly put you in touch with one of our service specialists who can help you with that. If you can share where you live and your email address I can connect you with a service specialist today. Alternatively, you can email [email protected] or call 1-800-567-2873 and our customer service team will connect you to the appropriate service specialist.
@dullyse2 жыл бұрын
Merci atteinte familiale vous avez éclairci soulagé des anxiétés
@_Fluorescent_2 жыл бұрын
Extremely well presented and informative. Easy to follow for someone who comes from a non-medical background. Thank you! (The newly diagnosed depression (Jan. 2018 on the timeline) broke my heart. I have a son around this age. Wishing the very best for this patient and their family.)
@MDCDMC2 жыл бұрын
Thank you for the kind words. Glad you found the session informative. :)
@lindaolsen5932 жыл бұрын
GCN
@lindaolsen5932 жыл бұрын
My gun is 10 not gun, machine error
@lindaolsen5932 жыл бұрын
Gcn
@lindaolsen5932 жыл бұрын
My gun is 10, yet have swallowing problems, drooping one eye, one side of face, hearing loss, resp, hx pneumonia and sleep apnea. Problems with hips and ankles. I am of french Canadian descent. Can this be the cause?
@MDCDMC2 жыл бұрын
hello, Linda You can send your question to our research team at [email protected].
@erikandersen94303 жыл бұрын
Fascinating video! How can I get hold of someone from this research centre so speak to us here at MDF in South Africa? I wish this info was more widely distributed. After 30 years with MD I have not come across studies like this. Well done.
I am sick with muscular dystrophy and I want you to help me, thank you
@MDCDMC2 жыл бұрын
Hi Ahmed, MDC has a number of support services and programs. What do you need help with?
@nasheemashahbazi6055 Жыл бұрын
السلام عليكم ورحمه الله وبركاته I have a friend with this disease. Did you get anything for treatment that helped you. I would be very appreciative of anything you can share. Shukran.
@loteschinobrador58733 жыл бұрын
I had mysthenia before shoul i do vaccine
@gomathyd93313 жыл бұрын
Can anybody give an answer for whether a myesthenia gravis patient can take covid 19 vaccination??????
@loteschinobrador58733 жыл бұрын
We have same question maam and no one nswered yet
@anson.meadows2 жыл бұрын
Evusheld would be the most I’d chance. The vaccines are even dropping doctors. My endocrinologist is one of these…she strongly recommends not getting them. I have severe neuromuscular disease and dysautonomia.
@lindakolach62633 жыл бұрын
Thanks so much for this great info. I have FSHD.
@MDCDMC3 жыл бұрын
Glad it was helpful!
@laetitiakerlo58643 жыл бұрын
Voir , sur KZbin, le très bon reportage allemand de ARTE d'une très bonne qualité scientifique et journalistique sur la maladie immunitaire et neurologique EM/SFC ( Encéphalomyélite Myalgique / Syndrome de Fatigue Chronique ) diffusé en juillet 2021. C est traduit en Français. L Encéphalomyélite Myalgique est une maladie du système immunitaire, grave , très invalidante, multi-systémique, orpheline. Elle est reconnue par l OMS depuis 1969 , codée G93.3 CIM 10 en 2021, caractérisée par son symptôme spécifique du Malaise Post Effort ( MPE ) . Merci pour votre intérêt et pour tout ce que vous entreprendrez pour faire sortir cette grave maladie de l ombre.
@edwardortman25933 жыл бұрын
That is interesting, I have never heard of autism and myotonia being related. I have DM1 and both my little brother and I are both diagnosed with Asperger's.
@MDCDMC3 жыл бұрын
Thank you for your comment Edward! Glad it was helpful.
@santeplus91283 жыл бұрын
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@santeplus91283 жыл бұрын
Pour finir totalement et définitivement avec vos problèmes du VIH/SIDA, la Dystrophie, érectile et diabètes, l'anomie Contacter le Dr sur appel +22962062392(WhatsApp)
@TheSpecialist233 жыл бұрын
Thanks for posting. Just found out from my dad he was diagnosed with this 3yrs ago. He is doing very well though. No changes since diagnosis.
@t_y8493 жыл бұрын
Timetable 0:00 Introduction 2:39 1) What is FSHD? 11:54 2) What are symptoms/signs of FSHD? 13:23 3) How is FSHD diagnosed Prognosis? 16:10 4) What are treatment options? What about supportive treatments for FSHD? 18:14 5) What research is being done on FSHD in Canada? 36:58 Q&A
@rezasalmanipour9473 жыл бұрын
It was very useful as I expected.
@t_y8493 жыл бұрын
Thank you for your comment Reza! Hope it was helpful. Let me know if you have any questions.
@akhileshwarmishra92153 жыл бұрын
Myasthenia gravis patient take corona vaccine sir
@shernettedennis34173 жыл бұрын
Do you have myasthenia gravis did you take the vaccine?
@i_almana86583 жыл бұрын
trop stylé la vidéo
@valentineheugas83813 жыл бұрын
oui
@manaxe13523 жыл бұрын
effectivement
@lichpitonilenoble2070 Жыл бұрын
Il est vrai
@jondavidson76983 жыл бұрын
Hi Alex, thank you for taking the time to tell your story. I'm curious to know how the graduation went, especially in our time of COVID. Congrats!
@kantilalbhanushali75723 жыл бұрын
We got good improvement in muscular dystrophy patients cases for further information please contact me on WhatsApp 91 9322303271
@katrinagracia9773 жыл бұрын
♥️🥰♥️🥰
@katrinagracia9773 жыл бұрын
♥️♥️♥️♥️♥️♥️
@medecintraditionnel19963 жыл бұрын
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@agelinagozes63653 жыл бұрын
COMMENT MYHUSBAND A guéri de la sclérose latérale amyotrophique SLA. J'ai perdu mon père à cause de la SLA il y a 5 ans, il a souffert de la maladie redoutée pendant 6 ans avec sa doctrine nous disant qu'il ne peut pas être guéri et que toutes les thérapies et les machines de survie n'ont pas pu le sauver et 3 ans plus tard, mon mari a également été diagnostiqué samedisease et j'étais dévastée, il s'est évanoui quand le médecin a lu le diagnostic parce qu'il savait à quel point la maladie est mortelle. Son état s'est aggravé et il était incapable de bouger et il a été confiné à la chaise la direction de la maladie précipitée avec son corps est la détérioration progressive du «muscle bulgare», qui contrôle la respiration, la déglutition, la voix et le mouvement de la langue. Les muscles de son cou se sont affaiblis au point qu'il ne peut plus tenir sa tête et le côté gauche de son corps est plus faible que le droit, les médecins m'ont dit que tous ses muscles étaient lus, il était capable de manger via une machine parce qu'il ne pouvait pas avaler n'importe quoi. J'ai recherché et essayé différents neurologues et différents médicaments, aucun n'a fonctionné et j'avais tellement peur de perdre mon mari. Tout en courant de haut en bas à la recherche d'une solution, j'ai rencontré mon ami de troisième année et je me suis vu tout bouleversé, nous gottal et dans le processus de discussion, je lui ai dit tout ce que je suis confronté. Il a feltsad et m'a parlé du Dr Sani qui a pu guérir son cousin. J'étais intéressé et il m'a donné son contact. Je l'ai contacté et il m'a envoyé son médicament et dans un espace de 4 semaines, il était à nouveau debout et en 6 semaines, il a été complètement rétabli. Il peut faire des choses normales comme marcher, manger, sans aucune aide. Je suis tellement étonné de la puissance et de l'efficacité de sa médecine. J'ai décidé de partager mon histoire pour que vous ne perdiez pas espoir ou que vous sentiez que votre monde était terminé. Contactez-le simplement par Email: [email protected] OU WhatsApp / appelez le +2348118184266