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are you healed now? ❤

I’m a 28 year old with marfans (my mother and all 4 of my siblings also have it) but we have been ‘lucky’ in the sense that our gene has only effected our eyes so far, I’ve had both of my lenses removed as they were dislocating, but I also have my heart scanned every year to make sure nothing ever goes wrong. Marfans can feel really isolating, but it’s so nice to find others who have the same struggles. ❤

That was beautiful xxx

Hi! I know this is an old post. Are you still taking Nortriptyline ? And if so has it helped.

I love this kid. God bless you, young man. I will be praying for you and your family.

Great video. When did you noticed your first symptoms?

👏🏼👏🏼👏🏼💝✨️✨️✨️

Outstanding young man 🤩🤩🤩💖💖

Eardrum piercing intro music.

What an amazing kid!!! Love him!

What a well spoken young man you are. The part of your heart that makes you a kind, concerned, loving person works better than many others. You are a delight and I send you love and hugs.

This video came up out of the blue in my recommendations and I am so glad I watched. My 14yr old daughter Annie has severe scoliosis and will be getting a major surgery in the near future. We both were shocked when we heard your son's name...if Annie had been a boy the name I picked was Cohen!! I've never know anyone who has the name and Annie wishes it was her middle name "just to be cool". Your Cohen is very articulate and it's wonderful to see he isn't letting Marfans hold him back from pursuing his interests. Annie is also very tall, similar to Cohen you wouldn't necessarily know she has any health differences, but she too has to be extremely careful when it comes to physical activities. Thanks for sharing Cohen's story even though I found it after 3yrs. Annie and I hope you're both doing well and in good health.

I have a daughter with marfans she is 59. Has had heart sugery and opperation on her feet. She is very well educated and is a great armchair sports fan thanks for sharing

What an awesome young man!

Can yu give me yr email address. I want to send yu a description of a successful treatment.

Hello thanks for All amazing awesome vlogs could I please say all your sons best amazing awesome big brothers ever and all your daughters best amazing awesome big sisters ever and all your sons best amazing awesome little brothers ever and all your daughters best amazing awesome little sisters ever could I please be all your sons best friend ever and all your daughters best friend ever and all your family best friend ever

My friend male 36 just diagnosed with this has developed a lot of serious problems now is being treated by neurologists in Boston. Long haul..

I have the sister disease to Marfan, Ehlers Danlos Syndrome my sibling and I both have it. We got diagnosed as adults

I've wondered if my oldest has it he's 6'6 his leg length is 38" for pants his ht is all in his legs and his arms are really long as well as his hands

Either career you decide is awesome. I’m a pet lover myself and have 6 dogs, two cats, several chickens and a Pygmy goat and a fairing goat. If my grown children have their way we will have a pet cow. Lol. I think we need more nasa scientists and definitely need more veterinarians. Lol. Either career you decide you will definitely make the world a better place!!!!

Hi do you feel floor is bouncing and Moving 24/7 when you walk? And your legs get weak and wobbly sometimes?

What an amazing young man. I'm not sure why TH-cam recommended this video but I'm glad it did. He is really a special young man. Lifting you both up in prayer. I know it's 3 years later so I pray you both are well and he's working on achieving his goals 😊 may God continue to bless you both 😊

so precious and beautiful boy.

What An amazing young Man Cohen I think you can do anything you put your mind to, look out world here comes the next great rocket scientist, God Bless you and your Mama.

He’s a sweetheart!!!

I don't have MdDs but I have Meniere's. I walk very similar when I'm have vertigo. Making Video's is great way to make Awareness to MdDS. 👍💛

How are you doing these days? Thank you

This video has been such an encouragement to me! Thankyou for sharing your story, so others dont feel so alone. I finally found a vestibular therapist and audiologist who treat mdds in my city, hoping they can figure out if what im dealing with is mdds or something similar as I still have not been diagnosed yet.

You are healed

I love you😘😘

I really follow you and I love you ❤️❤️❤️😭😭🙏

I'm so sorry you have been dealing with this for so long. I am struggling with mdds as well (although I have not been officially diagnosed). Mine started after several days of rollerblading. I believe that is what triggered it as I started feeling weird shortly after. This has been so incredibly difficult, so I do understand your pain. I have been dealing with this for 8 months. I pray you are doing better now as this was posted 2 years ago. Would love to know how you are doing and what things have helped you along your journey. I have watched alot of your other videos and I so appreciate them!

Beautiful ❤

Absolutely beautiful and the part where you said dancing in the storm I lost it tears .... thank you so much for sharing your story ❤️ 💕

I feel this so much...

We learn a lot about those around us when our chips are down.

Other than the ny protocol what do you think has helped the most? I’ve had it about a year and a half and I’m having a flare up. I’ve been doing the migraine diet for 9 mo and walking. I have mdds and vm

Wow 🥹this is truly amazing!

God Bless You Girl. Loved your interview on Emma’s channel

I have had MDDS for 6 weeks now and feeling likes it’s not going anywhere. It’s getting worse actually. It’s really crazy there’s not much that can be done for this, it’s terrible 😣

Thank you SO much for this! 🙏❤

Great video. Love your attitude!

☺️☺️☺️ little warrior🤍🤍🤍

I’m so sorry you suffer from this as well! I wish you the best!

This condition is a nightmare hell... I've thought about ending my life many times because this is so debilitating. Everyday is a struggle... The only thing keeping alive is I have a girlfriend... That's it... I just walk all day for relief... I can't ever be still because it feels like there's a huge earthquake and gravity pushing me.

I’m here with you! It’s terrible!

I can absolutely relate darling lady. I too have had MdDS for over 30 years. And have only recently been officially diagnosed. I live in Australia and very little is known here either. I was 23 when I first started getting symptoms and was put onto Xanax and antidepressants which helped...until they stopped working 6 months ago after some very tough, personal issues kicked my ass! I'm now coping with MdDS, VM, Disautonomia and Parkinson's symptoms which may or may not resolve? No body knows? I'm having tests with a Neurology team.. hopefully soon but Covid has knocked our hospitals into crisis mode so the wait for answers continues? I like you, have always been outgoing, fit, and kind to others. But we are all human and don't always understand what others are going through until we're unwell ourselves. Don't be hard on yourself.. you are coping with so much and friends/family/partners and strangers cannot know how this feels for us. It's also hard when you look normal.. but even that is harder to maintain some days. I wish you so much love and healing and thank you for sharing this video with others who are going through the same..and those who aren't. 🙏❤

Thank you for sharing your story. I sincerely hope that you have found relief and healing since you posted this video. I have been suffering with this syndrome for over 35.years...it all started when I was 23 and began after painful emotional issues and vertigo episodes that left me terrified. Nobody understood this condition at the time.. I was eventually treated with Xanax and antidepressants but recently had symptoms worsen again and my med's are no longer working. I'm now 55 and the condition has worsened.. only further compounded by Parkinson's symptoms which are likely due to misdiagnosis and years of psych medications. Nobody really knows if I will recover.. and knowledge and treatment of both conditions are not readily or cheaply available here in Australia. Like you..I was social, active, empathic, caring and had a great memory. I'm struggling with being single now as my anxiety and depression affected my relationship with my ex fiance and no body understands what we are experiencing or the terror of losing yourself. I feel like I am dying, going crazy and the fight to find inner peace, love and kindness for myself is an ongoing journey. But you are right.. it does teach us about how strong we really are! Please know you're not alone in this struggle. It may be a rare condition but we are united in the fight to be better, more caring, loving and compassionate people. This is just a part of the journey that the Universe set us on...acceptance is so hard but ultimately the only way through. Much love to you. 🙏

You mention in one of the videos that you're being more active, and how you're doing dance classes, walking, moving, etc. GOOD FOR YOU!!! I totally agree!! I'm very active (fortunate to have been at a low enough level to be active) and refuse to give in to the condition. I actually think it helps me - it's part of that continual neuroplasticity work that has to happen. I am looking into the optokinetic therapy and want to get it going. Thanks for the term, I didn't know what to call it. ;P Best to you!

How are you doing now? Look into rock steady program and neroplasticity..you can change your brain pathways