Diagnosed with Ehlers Danlos Syndrome

[@cassiefreeman7804]

I am so glad the test came back with “the good one”. Also glad that you’re getting help

[@SweetPea112]

The thumbnail gave it away for me. As soon as you said the name, my heart sank and I literally teared up. I've watched Christina Doherty for years (she used to post on KZbin but now is mainly on IG) and watched her struggles. I am so glad that you are keeping a positive outlook and I will be keeping you and your family in my prayers.

[@kristimartin3427]

Fellow Zebra here. I also knew something was wrong with me and no doctors helped me. It wasn't until my son was 14 and suffered with migraines that gave us Tyr diagnosis of hEDS. My son also has Chiari 1 Malformation of the brain. He wasn't symptomatic at the time so no intervention was needed. Now he's 26 and having symptoms so he sees a Neurologist in June.

[@Oscar-kj8pb]

Hey, I’m very happy for you not having vascular EDS! Be happy about it, I got diagnosed with vEDS last year and it isn‘t easy to just accept it because you cannot change something about it. I had 5 surgery’s since i got the diagnose including an arterie rupture that almost killed me. And I gotta handle all that while being only 18 years old. I went through the same emotional stages as you while waiting for the diagnosis, just had a different outcome. Greetings from Germany Oscar

[@FamilytaleVlogs]

Thank you for sharing Oscar. We need to raise awareness for vEDS. ♥️

[@rebeccaturpin3440]

Thank you for hitting things kinda on point to be a great awareness video for a long time to come

[@michellerobinson4653]

Thank you for sharing xx

[@gertaze1781]

😭😭😭🫂🫂🫂🫂 crying with you ❤️

[@AZebraReads]

Welcome to the Dazzle. It sucks here but we're here for eachother. I was diagniosed in 2017 after a few years of symptoms. Best advice I can give you for where you are right now with symptoms is start and stick to physio and try not to do any "party tricks" or push yourself because you can.

[@sonjabryant2567]

Thank God you didn’t have the worst kind🙏🙏🙏🙏🙏

[@FamilytaleVlogs]

Thanks Sonja! -Max

[@heidi6607]

Hang in there! I have the same. I have both my ankles operated on because I constantly sprained them. I wish you courage to give it a place and incorporate it into your life. Glad to finally see a vlog again. Even if it was emotional for you. Praying for you

[@notheretodayortomorrow]

Welcome to the Zebra community! Thank you so much for sharing! We are so happy to have you! I hope you find lots of answers and support though this journey.

[@notheretodayortomorrow]

edit** Waiting on if I am accepted for genetic testing in Canada..

[@jancarlson2165]

I'm so glad you're ok!! Yay!! Please tell Sasha I said hi!! Love you!! ❤❤❤❤

[@patseemore5019]

Max you are awesome, thank you for bring your disorder to our attention. I do know others who also have issues like you, I will encourage them to seek out the right doctors to help them too.

[@amberjohnson8026]

Thank you for sharing this with us Max! You’re absolutely right, we have to live our lives wit the cards we’ve been dealt…and sometimes it’s scary! Hearing about EDS, I wonder if I might have it also. We actually had my son evaluated by an OT and they mentioned he’s hyper mobile and she noticed I am too. Sooo idk. Sending you a lots of support

[@jodeming5088]

So pry you are going thru all of this. As a person who has autoimmune disease’s it can be frightening. As long as you get the answers and receive treatments that is what is important.. this video came straight from your heart and well done. Max, this old lady would be proud to have you for a son.

[@ax3lthepup]

as soon as i saw the thumbnail i knew it was EDS, i have it too. i'm only 18 and i need a walking stick most of the time because my hips and knees pop out, dislocate and click all the time. it makes working really hard especially when not many people know anything about it.

[@sarahfitz420]

We love you Max! 🙏🏻 your positivity will carry you and your family through this wild life. 😊

[@crystalh1290]

fellow eds warrior here. it can be a scary thing. i was scared when i learned it was suspected. once i did the research i started feeling better. knowledge is power. i was diagnosed almost 8years after suspected. my drs didnt even look into eds, it was a physical therapist who suspected it. most doctors dont know about it so learn all you can. i am learning how to work with my eds, im getting treatments to help strengthen my tendons and ligaments without surgery. (my ankles are shot too). if you arent careful it can lead to some very scary comorbids that can develop which happened to me since some people wouldnt listen when i said i was injured. listen to your body, learn to work with it. eds isnt a death sentence like some doctors make it out to be (ive been to several like that). youll find out your body can do some really strange stuff with eds, some people might be grossed out, but hey its a part of having eds.

[@Adoptivemomx2]

Thank you for sharing your story! I truly believe you will help someone else w this story. I’m so glad your ok! I’ve been following you guys for a long time and I have always loved your “realism” on who you and Sasha really are! This just proves my point. Keep believing that it will all be ok and glad you took initiative to find out what was wrong. Now move forward and enjoy that beautiful family you have! Have a great week

[@FamilytaleVlogs]

Thank you! -Max

[@alexisbuckles4651]

That sounds really tough to go through and continue to go through, but so glad you found the right doctor to help!

[@FamilytaleVlogs]

Thanks Alexis! -Max

[@tiffandfam7466]

Praying for you Max 🙏 Sending hugs 🙏

[@alh2116]

I know how you feel deep down. I have a condition called Fragile X Syndrome I am a carrier it was scary when I found out that I was a carrier and gave it to my daughter I cried. I love you guys. I miss your videos ! You are in my prayers just trying to work though all of that and figure out what your steps are you need to take. I understand how hard it is but know you have answers to your questions you know what to do. Have a blessed week.

[@FamilytaleVlogs]

Thank you @ALG♥️! -Max

[@naomi.e.333]

I was wondering if this was going to be Ehlers-Danlos! I’ve been seeing a lot more doctors acknowledging it as a legitimate diagnosis, and I feel like I deal with quite a few of the symptoms myself. There have been more pressing health issues I had to address before it, but this video reminded me to not put it on the back burner! I’m so happy you trusted yourself and sought out treatment and testing

[@FamilytaleVlogs]

Thank you @Naomi! -Max

[@AngieW2727]

Hey. While I know you’re a carrier, Throughout this past year, I have met so many people that I knew have EDS. They have some struggles but they are happy people with babies and beautiful lives. It’s just a little bump in the road. (: I’m also a Christian. I’ve found that I have a chronic illness and while any chronic anything feels like a death sentence, it is not. Take joy in the life around you and be as healthy as you possibly can ♥️

[@FamilytaleVlogs]

Thank you @Ang W! -Max

[@kerryhorrocks4453]

I can do that what your doing on the thumbnail as I have EDS now I’m getting older I just get more pain I’m at the stage where I’m finding out which type I have sending you love it’s hard to come to terms with health issues ❤

[@catsonpurrade5255]

I have Stickler syndrome Type 1, also a connective tissue disorder. I wish this was more widely known or studied. I have blindness, heart and vessel problems along with having early onset of osteoarthritis. I started with joint pain at age 7. I have had so many joint replacements I'm running out of original parts. 🙄 Please have your kiddos tested. I didn't find out my diagnosis until my 2nd kiddo was born. Unfortunately, first 2 kids have this syndrome and my younger 2 kids do not. Early testing is key to managing symptoms.

[@FamilytaleVlogs]

Thank you for sharing 💛

[@nikkiperrault6420]

My husband has ehlers we found two years in to marriage his deals with his muscles he rips if he turns wrong way he broke his shoulder really easy and has to put back into place it very serious disease no one does talk about I watch my husband on daily and I am amazed how well he handles it he rockstar and we have kiddos and everything

[@FamilytaleVlogs]

Thank you @Nikki Perrault! -Max

[@Jessssicadanielle]

Wow! I have suspected hEDS and have never heard of anyone else having this besides my family. Both of my shoulders dislocate without force and it’s literal hell. I hate it. And surgery cannot fix it for me because of the stretch of my ligaments etc. I wish I could get tested in Canada but with our shit healthcare system, they aren’t willing to test me for it despite having dislocations every 6 months.

[@dianawright2030]

I can do that trick as well. I think I’ll talk to my doctor about it. It might explain why I’ve torn both of my thumbs and tore my ankle.

[@Its_Leona.L]

In my family on my mother's side they have Marfans Syndrome which I also Disconnective tissue disorder. I took genetics testing, I am one of the lucky ones who don't have Marfans Syndrome.

[@FamilytaleVlogs]

That’s scary, glad you don’t have it!

[@Its_Leona.L]

@Familytale Vlogs After leaving my comment I lost my niece to Marfans. She was only 28 , went in for surgery on a Friday and she passed away the following Tuesday May 9th. 😢 I am so grateful I don't have it. But losing family members to it is heart wrenching.

[@FamilytaleVlogs]

Oh my gosh, I'm so sorry to hear that... 💙 I wish there were better words to say but my heart is with you and your family.

[@Its_Leona.L]

@@FamilytaleVlogs Thank you!

[@kristine8469]

I am having my daughter tested for this. Her father has it. It is scary. 😢

[@tamekadavis9051]

🙏🙏🙏🙏🙏

[@athenaspencer4684]

❤️❤️❤️👋😁

[@Truerealism747]

Yeah heds autism ADHD fybromyalgia lost my mum to severe ms heds autism stress sensitive genes rccx theory😊