Yumi describes her experiences living with LGMD2B
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- Опубліковано 4 жов 2024
- Yumi describes her first symptoms and how she was eventually diagnosed with LGMD2B/Miyoshi myopathy as well as her experiences with pregnancy as a muscular dystrophy patient and how she is still living life to the fullest at the 2016 Jain Foundation Dysferlin conference.
Hi,Yumi.Thanks for your touching speech.I'm a 2B patient in China.Your story inspire me a lot!
Hi Ariel! I didn't see this comment until now! Thank you for your kind words! Where in China do you live?
Im a 2B patient and its very inspiring everything you have said! Thank you for your time and your story 😊
hi yumi, thats a great inspiring words. even i am diagnosied with 2B from india, now am pregnant . this helped me alot thankyou so much
Hi I'm Kantilal Bhanushali I like to inform you that we got good results in muscular dystrophy patient cases for further information call me on.
91 704156541/91 9428056321
Whatsapp/imo 91 9322303271 so I can forward video and reports of CPk test and photos of improvement of muscular dystrophy patient
hello alekhya ,,, I am currently diagnosed myopathy ,,, what is your symptom now ???
this was so moving. great job, Yumi. I'm so proud of you! xo
Apologies Yumi, I'm 6 years late. Excellently done. I am 53 years old, was diagnosed at 16 years of age, just after achieving my Karate Shodan / 1ste Dan / Black Belt. Very much like I didn't have the information back in 1985 in South Africa, so I adjusted very much like you had to. My husband and I have been married for 32 years, we have 2 adult children [son 28 yrs and daughter 26 yrs.] I have been power wheelchair user for 16 years now, manual wheelchair use for 10 years previously. Best wishes of success to you and everyone in your support foundation.
Hello Janeen, we thank you for the kind words about our foundation. We also have a registry specifically for those genetically diagnosed with LGMD2B. We have over a thousand members from all over the world who can connect and share with each other. If you would be interested in being a member, please complete a Dysferlin Registry online application: www.jain-foundation.org/forms/dysferlin-registry-application/.
Hi, Yumi. Thanks for sharing your story. You inspire us!
Thanks, Ted!
your speech gives me inspiration
Touching and inspirational speech
Thank you, Eugene! I appreciate it!
May God bless you guys
I have limb girdle 2b and have just had the worst fall.So low at moment and had enough.Usually very strong.My back is in agony.
Hi Shawneena, we wanted you to know that we saw your post and to tell you that you can reach out to us directly to talk about your situation, learn about this community and connect with us and other patients by emailing us at patients@jain-foundation.org.
Thankyou so much.Usually very strong but had enough now.
Hi I'm sorry to hear that,hope your ok.i also have limb girdle MD n it's so hard,many times iv thought of just giving up n depression was horrible..I'm still working on dealing with this struggle even making a few videos about my life with MD. I'd like to invite u over I'm @yanet Cortez..I'd love to see n hear more n hope you enjoy this new thing I'm trying..lol I usto hate being recorded now I'm ok with it👍 God bless
@@nancylovesme I recently fell back n almost busted my head open I also have limb girdle..🤦♀️ so frustrating I'm sorry you're also going through that please come visit me on my channel @yanet Cortez..how long have u had it?
Hi ma'am I need this type of chair but can't afford.
please ma'am help me
If you have a question for the Jain Foundation, you can send it to patients@jain-foundation.org and we will respond.
@@jainfoundation Thanks actually I have LGMD so I need power chair that is your most kindnees thanks
@@sakeenaanjum1268 This is not a service we provide. The Jain Foundation is focused on research for therapies for dysferlinopathy (LGMD2B). Please check with your local MD foundations for options.
@@jainfoundation ok can I come for physiothrapy in your jain Foudation please tell me
@@sakeenaanjum1268 That is not something we do. Please check with LGMD Info for resources: www.lgmd-info.org/