How we dealt with EDS in HIGH SCHOOL (*not well*)
Vložit
- čas přidán 10. 06. 2021
- Ehlers-danlos syndrome (EDS) can be difficult to deal with in middle school, high school, and college. In this video, Gigi and I talk about our own experiences going to the same high school and dealing with EDS.
Check out our video on Gigi's channel! • Gigi & Izzy talk about...
Gigi's Instagram: / itsgigirobinson
SUBSCRIBE TO MY CHANNEL ▶ bit.ly/2M4Ko0c
📸 Instagram ▶ / izzy.kornblau
⏰ TikTok ▶ / izzyk_dna
The views expressed in this video are my own and do not reflect the views of Mount Sinai Hospital.
✩ ✩ ✩ ✩ ✩ ✩
WHAT’S EHLERS-DANLOS SYNDROME?
The Ehlers-Danlos Syndromes (EDS) are a group of more than 13 genetic connective tissue disorders that affect the joints and ligaments, blood vessels, gastrointestinal tract, and autonomic nervous system, among others. The most common type of EDS is hypermobile EDS (hEDS), which used to be known at type III. Some of the most common symptoms and co-morbidities of hEDS include chronic joint pain, joint instability and dislocations, dysautonomia, and GI tract dysmotility.
MORE INFO ABOUT EDS:
🧬 www.ehlers-danlos.com/eds-types/
🧬 bit.ly/2N95xTE
MORE INFO ABOUT POTS:
💓 www.potsuk.org/what_is_pots2
❤️ cle.clinic/2p1lByR
MORE INFO ABOUT GASTROPARESIS:
💚 mayocl.in/2BRQTuR
MORE INFO ABOUT MUSCLE TENSION DYSPHONIA:
🤍 bit.ly/2MLUYXI
FTC Disclaimer: This is not a sponsored video.
As an Amazon Associate, I earn from qualifying purchases.
#eds #ehlersdanlos #highschool
We didn’t need elevator passes at my university but some random professor who I had never met before actually had the audacity to ask me if I “didn’t think I was a little too young to use the elevator.” I was so shocked and embarrassed at the moment that I couldn’t even respond. I did eventually find his office after class that day and just quietly showed him my pacemaker ID card. The look on his face was priceless! I also went to a visual and performing arts high school, btw. I went to HSPVA in Houston! Great video! 😊
I can relate to the painful hands and wrists from drawing or writing! My hEDS diagnosis was delayed until age 38, but pain and fatigue induced by writing was one of the first signs of my hEDS in preschool. The preschool teacher helped me out by buying me some really thick pencils. In kindergarten I would constantly switch hands when writing, due to the pain and fatigue. Unfortunately, they forced me to choose one. Writing hurt so badly, and I really wish I had just kept switching anyway. Spelling class in 4th & 5th grade were absolute torture, as we had to write the week's twenty-five words five times each every day, to prepare for each week's test on Friday. I didn't need the repetition to learn how to spell the words, so I would find ways to reuse the same word list I wrote on Monday by finding ways to remove the teacher's markings so it would look like I had written them anew on the rest of the days.
Life would've been so much kinder if I had been diagnosed with hEDS when I was much younger, and accommodations could've been made.
Izzy cariad I’m squirming in sympathy with you both! Back in the mid 1970’s, we had to have a briefcase in our school. Add a sports bag, hockey stick, lacrosse stick, flute & music case to that for the first day back at school and it was an extremely painful walk to school, even though it was only 10 minutes away. There were no accommodations in our Victorian building and we were up and down stone staircases all day as we moved from class to class. Thankfully our books lived in the desks in our form rooms, so at least we weren’t schlepping everything with us all day. I was finally diagnosed when I was 50. xxxxxxxxxxxxxxxx
Gosh I can imagine just how painful that must have been for you.
I'm stopping 12.5 minutes in. I graduated in 1995. I'm old compared to you. I'm surprised how much thinking about my experience compared to yours is getting to me. It was long ago, but impacted me so much that it's still painful. My high school had lower level, 1st-3rd, and another partial flight up with lockers. My locker was on floor 3.5. We had 3 minutes between classes. The school had an elevator or stairs. I had to fight for access to the elevator on crutches. The only reason they allowed it was because I couldn't get between classes, on times, using crutches on stairs packed with other students. Not to mention asthma as well. I'm glad things have improved some since then. It still isn't anywhere near where it should be yet. :(
It makes sense that it's still painful to look back and think about the unfair and hard stuff you had to go through in high school. I still think about the hard stuff from back in high school and it hurts to think about too. I hope things keep getting better over time
LOVE YOU! Thanks for having me!!!
I CANT WAIT TO DO ANOTHER!
Rolling backpack gang! My parents absolutely forced me to use my rolling backpack in elementary and middle school despite how remarkably Uncool it was, and I'm so grateful for that in retrospect. I can only imagine what kind of wear and tear I would have done to myself much earlier on.
My school's elevator didn't really work. You couldn't summon it from the third floor. You had to send someone down to the second floor to then ride it up to the third floor. This was fine as long as only one person in the whole school used the elevator (it would be where you left it - ie. if you had a class on the third floor, no one would ride it elsewhere and it would stay on the third floor) but that was rarely the case.
Being a disabled teen is a shit show lol. Love the video!
One accommodation I had in HS was an extra set of textbooks Bc we couldn’t figure out my back problems (took 20 years?) and rolling backpacks weren’t even a thing. I had one set for home which was great and not rly embarrassing
I’m going into my junior year of high school soon and I’m terrified. I have EDS, POTS, As well as some other chronic illnesses. My pain only got really bad over the summer so I don’t know what it’s gonna be like this year. This video almost made me cry because of how much I was able to relate to you guys. As an Artist, it was really cool, but also sad to hear about your experiences horrible teachers.I would love more videos about you talking about accommodations for school, as me and my parents are both stumped on what to do to help me.
wait I relate to this so much, I'm a senior now and my school is weird with accommodations and stuff but I'm finally finding out all the things I need for my body to function better. let me know if you have a discord and would like to dm me sometimee
@@pupsucks I do have a discord, but honestly I don't use it much.. my insta is @Bridg_kit if that works
@@pupsucks It'd be nice to be able to relate to someone around my age about this :)
Thank you for opening up about this. I have a rare facial disorder and several other issues. You all have made me feel like I was not alone. Thank you to the both of you.
Love your vids! Would also really enjoy seeing you talk about items to bring to college to help with chronic illness!
My twin sister and I were finally diagnosed with hypermobile Ehlers Danlos this year. I really appreciate your videos!
I'm greatful for your channel! I did the Brighton scale test that you posted a while back.
I was sent to a rheumotolgist that has diagnosed me with hEDS I scored a 9.
I'm having all the other testing done and I am having heart palupitations
I found you originally from your gastroparesis vlogs.
I'm 46 and now just finding all this out.
Thank you so much for your channel and sharing your experience.
I wouldn't have ever known that my dislocations was a actual illness. Now I know why I have gastroparesis and everything else that is going on medically with me.
Thanks!
Oh BTW I watched the vlog about the arthritis creams. Wow ur right icy hot is one of the best! So is Volteren
Sorry you weren't diagnosed until now. I'm also 46 with hEDS, but wasn't diagnosed until age 38 (even though EDS was suspected at age 21). Hoping you can find doctors who are up to date on the various treatment options. I take Mestinon to treat both my POTS/palpitations and gastroparesis/dysmotility, and nightly low dose Clonidine to further treat the heart racing and other EDS issues. Some other good medications that are popular for treating EDS dysautonomia include Ivabradine, Guanfacine, or a beta blocker. (Beta blockers gave me bad side effects, though.)
I am hyper mobile and I had weird episodes of palpitations and it was later diagnosed as inappropriate sinus tachycardia (IST) because it didn’t have the trigger of positional changes. I find the other reply interesting because I’ve always been on clonidine 0.2MG to help me sleep at night and to prevent some of my tics. I’ve never heard of that other use of clonidine!
I'm so glad my videos were able to help lead you in the right direction! That's a long time to be undiagnosed, and I'm happy that you finally have answers!
@@ParaTara Clonidine has quite a few off-label uses; such as treating dysautonomia/POTS, insomnia, anxiety, PTSD, migraines, night sweats, hot flashes, neuropathic pain, fibromyalgia, and tics. It signals the body to release less norepinephrine and adrenaline into circulation, which in turn calms the sympathetic nervous system and "fight or flight" panic and anxiety response. Norepinephrine or adrenaline hitting the beta adrenergic receptors is what speeds up the heart, and Clonidine removes some of the fuel from that mechanism. Its sister drugs, Guanfacine and Tizanidine, work similarly; and are also popular medications for treating issues related to EDS and HSD. Nightly 0.2mg Clonidine is the dose I'm on as well.
@@Dulcimerist couldn't figure out why I was vomiting for 3 years thought it was cancer and so on.
Than this year found out I have gastritis than was still sick than GI ordered a stomach emptying test and was told it is gastroparesis.
I have has gerd reflux since I was 12 and was "doubled jointed" since I was little as my father called it.
My knee's and ankle's started to dislocate since I was 8 and 11 WOW I'm in shock 😳
I have a whole list of other illnesses now that IK is related to hEds
I do have bipolar and PTSD and servere anxiety
I do Wonder how an abuse/ child abuse history would effect hEds 🤔.
I have also been diagnosed with fibromyalgia.
I wish there was something for tingling that I now feel on my face and neck 😔
OH would anyone know if you can have pots and have high blood pressure ?
Great video ! The park looks so inviting. Can totally relate to the backpack issue back in HS, and art college issues.
Loved this interview ❤❤❤
I could 100% relate to the challenges y’all had in high school! I’m currently in high school and it’s so nice to know i’m not the only one that has issues with teachers and your disability! ❤️
Ugh hang in there! There are so many great teachers out there willing to accommodate and understand. But the bad ones are SO hard to deal with, both physically and emotionally. You're definitely not alone
Wow, this vid helped me a lot! At high school I used to get so many injuries that the nurse stopped believing me, I used to get so out of breath using the stair and it made me so embarrassed because I wasn’t unfit it was just a lot on my joints, caring my bag cause me agony and trying to get a lift/elevator pass was impossible as the guidance teacher wouldn’t believe that you were in pain or struggling
Plus the time it takes me to write notes was unreal, it would take me hours while it would take other minutes and I’ve just realised that it’s because of the strain on my wrist and the pain in my fingers
could you do another similar video on advice and suggestions? I'm in high school now and it's rough. Also, my parents are against mobility aids and to an extent accommodations as well, but I desperately need them and I don't know where to start or what to do.
Sorry you're dealing with that. I have hEDS, which was undiagnosed when I was in high school, and the effects of the hEDS and lack of accommodations caused me to drop out of school. (Later I tested out, since I had a 4.0 and plenty of credits.) Your parents really need to get on board, and your doctors and the school counselors will be important. Speak with all of them. Perhaps an IEP or 504 Plan could be developed to help you in school. Izzy may have done a video about those already.
I'm sorry that your parents are against mobility aids and some accommodations. I hope you know that both are completely your right to use! Just because you can physically do something doesn't mean you should have to if it causes a lot of symptoms, and I hope you can find ways to use the tools you need
I’m an Occupational therapist and have EDS. Have a PT or OT make those recommendations. There are Facebook support groups for EDS that might provide you with the help.
i talk to my friends now a lot about how my back problems are probably as bad as they are because bags in school (especially private school) were SO HEAVY and they didnt really educate you on how not to hurt yourself
I do stairs a ton. I have to ride the elevator. It’s an accommodation I have. I look perfectly fine on the outside. Rarely I would use the stairs and when I did kids would say oh your faking you don’t need the elevator. They would just say crap to me and about me. Girl I feel you your elevator experience.
Update: Got the 4!
I'm watching this during my yearly back to school cry (I use a rolling backpack but I have a negative relationship with it.) My worst experience was with my AP LIT exam and them messing up accommodations so terribly that I still had to write by hand. (I could have chosen a later administration, but I had been prepped to take it on the normal day). I know I am capable of a four at least, and I need a 4 to get any credit in my state. I am hoping that the excruciating pain of the exam pays off.
I went to boarding school and there was no elevators or ramps it was all stairs. The school was in old buildings with nothing having been updated since it had been built. Our backpacks were so heavy and walking from the dorms to school sucked. I didn't know about my hEDS at that time and never sought any accommodation not that there was much they could do with no elevators or anything.
I'm a senior in highschool awaiting diagnoses with HEDS. I'm getting an elevator key on Monday and I'm nervous of the sole fact that im overweight and I just *know* people will think I'm using it because I'm lazy
This was very interesting as someone who had countless issues getting through school and college. I found one of your other videos about growing up with EDS very relatable, too, and just wanted to mention it if other viewers might find it helpful. It's called "Overlooked Early Signs of Our EDS."
12:35 i was an art major for a semester and my EDS is part of why i changed majors. i had to carry around a 15lb supply kit that was massive, and it caused me crazy pain and problems with my POTS. and it didn’t help that the commuter lot was about a 15 minute walk to the building. in that same class you had to stand for 3 hours straight and draw on an easel which also caused a bunch of issues. it was also bc of these issues that i had trouble with the quality of my drawings. my teacher wasn’t as rude as hers, but it was still apparent that she did not think i was good at all. i dropped that class after 2 weeks.
By the time I was in high school my classmates were more understanding and didn't make me feel different I was very quiet. I remember in kindergarten I walked slow so that I could try to relieve the pain and be able to move but for so long everyone and I mean everyone tease me about how slow I am. I have to do things slow it does take longer to do things. Typing I do slower than others and my coordination is slow because of my cp
Gigi's dog is just like the dog I used to have.
Izzy, hii! Thank u for your video, I hope u are having a lovely day, I will make few suggestions 🙈:
It would be amazing to see a video about how menstruation affects EDS, I dunno if occurs to more pp, but when I am on my period my joints hurt waaay more, and it's not a bit or casualty. Can anyone relate?
Also would be super interesting to know what is normal range movement and what is not. I dunno if this happens also to more pp but many times I hyperextend my shoulders and I realize that perhaps I am going too far in the movement because the crack and twist inside, but does not hurt as such so I dunno what might be, but prolly not "normal", and other movements not safe to perform.
Oh and I would like to know a lil more about mast cell activation.
Thank you for your videos, they make me feel not alone and it's great to learn how our syndrome makes our bodies work different from the people without the mutation.
As a person currently on their period, my pain has spiked and just existing in bed hurts. It definitely gets worse around my period, and I'd be really interested to see why that happens!
1)I have eds and my school have elevators but because I’m not on crutches or have any visible support I can’t use them and 2)
I went to first aid as my legs were in so much pain and they had the audacity to say that I was lying and it was period pains whilst looking at the big words on the computer saying: SEN(or something) dyslexia , adhd , Elos danos syndrome (not spelled right)(EDS)
I struggled in school. I was always in casts, on crutches and in a wheelchair a few times. I was misdiagnosed with osteogenesisimperfecta at 13 and found out 2 weeks before my 37th birthday I have hypermobility ehlers danlos syndrome. They said I don't have OI but that due to eds i keep breaking bones. I was made fun of alot in school and in high school i just struggled big time.. I was pushed down the stairs in middle school which rebroke my leg. Kids would steal my crutches and it got so bad in high school these kids took my chair with me in it and pushed me down the halls. I hated school so I just kept skipping.
I went to online school after I was diagnosed so I would stop getting bullied for being sick all the time.
How can a genetic counselor confirm hEDS when there's no genetic marker for it?
I think she meant that they did that to rule out other types.
yeah i believe she means they ruled out the other types so it's def hEDS and not the others
amazing vidoe i enjoy love it youa e so pretty
Hold on there Gigi, hEDS is the only EDS subtype that doesn't have a yet-identified genetic marker. How did they use genetics to Dx you with hEDS? (Source: med student who has hEDS and did her capstone project on EDS).
if someone has obvious signs of hEDS and passes the criteria, some doctors still like to do genetic testing to rule out other subtypes, thereby confirming the diagnosis of the hypermobile type. This is done for many hEDS patients if they or their doctors want to.
@@IzzyKDNA ok she should have made that clear - genetic testing for OTHER dx's not for hEDS. Makes sense.
taking picture of books, now i want to try charging my nokia 3220
I sent you a message on instagram about singing :)
It’s causing me pain just watching you sit on the ground 😅