I just did that test last week and gave it to my doctor. I had 9/9 but can't bend my thumbs back anymore as I'm 62. I ticked everything yes on everything, except the 2 heart questions, never had it checked but do get palpitations. A doctor saw my daughter for the first time and saw it. So we are seeking diagnoses. My mum has it also, you'll be pleased to hear she turned 98 this month. So it doesn't mean your life will be shorter because of EDS, some good news.

hey, Im a nurse from Germany :) thanks for sharing your story in detail on this chanel, I'm sure it will really help many people and shed some light!! May God bless you and make it easier 🧡

I was not having much joint pain when I was your age, either... It started with an injury when I was in my 30s, so be careful.

As joint dislocations are so common with hEDS, I automatically thought that there is no way I could have hEDS as I’ve never had a joint dislocate, but what I thought was not actually true…..Stories like yours are important to hear so that the is an awareness that hEDS presents differently from person to person and that you don’t have to have experienced a dislocation to have hEDS.

@sweetpisces96

2 жыл бұрын

If you don’t mind me asking, what were your symptoms? I have had a lot of issues the last 5 years. I just heard of EDS. I fit a lot of the symptoms but not the stretch skin or dislocations

@baileysice2715

2 жыл бұрын

@@sweetpisces96 hi Sierra various symptoms and ailments brought me here too and I've never heard of this condition either. I've been diagnosed with fibromyalgia but l don't think it is fibro. Are you OK now?

Makes me wish I video to my geneticist appointment! He totally took pictures of my hands and my wrists to use in the text book he's writing about EDS :)

@mariah7495

4 жыл бұрын

oh wow that's awesome! would you mind sharing his name so i can look out for the textbook when it's published?

Hi! I’m a fellow hEDS Spoonie with POTS and I’ve had several surgeries due to my hEDs, including double jaw and spine surgery. I’m so glad I found your channel and look forward to following your journey!

@HealingWithRachael

4 жыл бұрын

Thank you for your sweet message! Welcome 💚

I'm so glad you got your official diagnosis!

@HealingWithRachael

5 жыл бұрын

Thank you sweet girl

So glad you got a diagnosed. Praying for you. 💓🙏

@HealingWithRachael

5 жыл бұрын

Thank you so much! That means a lot :)

I’m glad you got the answers you needed and you got your diagnosis, now you can hopefully get treated properly! My Neurologist is the one who diagnosed me with EDS, of course he also treats me for Epilepsy. My Epilepsy is not due to my EDS, though… According to my research , experts are linking EDS to Epilepsy. I have Classical EDS. I have a high palate in the top of my mouth. I can wrap my hands around my wrist. As for my family… they have Osteogenesis Imperfecta but my dad is the one who has symptoms of EDS from what he told me that he was able to do as a child.

I was always being taken to the doctor as a kid/teen with joint pain, injuries and was always told to my parents it was growing pains ugh! Nightmare, they know so much more now (I did have a beighton score of 7/9 now it’s only a 3-4 out of 9..) I’m in the older age bracket now and all the sections below I tick most of them waiting to rule in out cEDS but so far told I have hEDS.. I have so many other organs involved too I’m a Tubie and I first had issues as a kid I have pots, subluxations, Gastroparesis, Bowel & bladder part paralysis and gallbladder and pancreas dysmotility also as well as autonomic neuropathy & small fibre neuropathy I’m a wreck lol x

what a bright young lady, and great educational video.

@HealingWithRachael

4 жыл бұрын

thank you! 🙏🏻

so so happy that you finally have a proper diagnosis!! always praying for you sweet girl 💚

@HealingWithRachael

5 жыл бұрын

Ashley Arrington thank you so much ashley 🥰 right back atcha cute girl 💚

So happy you were able to get this diagnosed. Hopefully now you can get some treatment for it! 🤞🏻 Loved the video, Rachael! 💚

@HealingWithRachael

5 жыл бұрын

Aww, thank you so much Hannah!! 💚 You are the best!!!

Thank you for your support your videos always put a smile on my face and I think to myself if you can do this I can too

@HealingWithRachael

5 жыл бұрын

That makes me happy 💚 Rooting for you!!!!

My geneticist appointment was another bad experience as he was such a dismissive condescending Narc I barely lasted through the tele-health visit of it, lye was adamantly denying hEDS, ordering a genetic test for bone disease that I know will come back negative and he said if it does then we’ll look at possibility of hEDS too “but this and that” at this point I’ve learned drs don’t want to diagnose something they have no idea of and the good drs are the ones who straight up say I don’t know my baby out it, so I’m looking for that person

I was diagnosed POTS a year ago, and have been told that I may have EDS, but none of my doctors have told me what to do to get diagnosed. I'm going to try and see a geneticist. I have bad joint pain that sometimes keeps me from being able to walk, and all doctors have been dismissing it

@HealingWithRachael

4 жыл бұрын

I’m so sorry to hear you’re suffering that much and not getting the help you need! There are often local EDS facebook groups (like for each state) and usually the members can help people find EDS award doctors. Unfortunately not all geneticists are EDS aware. Keep fighting for answers...good luck Anna!

@Dulcimerist

3 жыл бұрын

Check out the worldwide directory of doctors who specialize in EDS, which is on the Ehlers Danlos Society website.

Thank you for sharing your journey! In my family it’s not just me now as my kids also have symptoms such as knee instability, foot pain, etc. So curious as to where you were finally able to get a proper diagnosis. I’ve only seen a local general rheumatologist who said “yeah, you’re hypermobile” but had little more to say about it except that I can take Tylenol 🙄 so I’m basically self-diagnosed and self-treating after experiencing many annoying health issues. The POTS was bad but mainly just during my pregnancies.... Anyone else with diastolic hypertension?

Adding captions would greatly increase your audience

@HealingWithRachael

3 жыл бұрын

Thanks for the suggestion Anna! I think all my newer videos have them :)

I have to manually put my knee cap back in the center so I can stand from a sitting position.

Hi! Did you feel better when you were wearing this neck brace?

I have celiac disease and pseudotumor cerebri too

@HealingWithRachael

5 жыл бұрын

I am sorry you suffer from those things too

If you don't mind. What doctor did you use?I been sick a long time and I live in an area of unknowlegable doctors?

@HealingWithRachael

4 жыл бұрын

Hi Tracy, I saw a geneticist in St. George, Utah named Dr. Arch. Typically if you find a FB group for EDS in your state, you can find recommendations for EDS aware doctors there. All the best!

Thank you I am really struggling with my pseudotumor cerebri my pressure was 23 and all the medication makes me sick I was thinking about going to Johns Hopkins to get evaluated I have lost 30 pounds and the disease is getting worse not better

@HealingWithRachael

5 жыл бұрын

I am sorry to hear that! 😢 My body couldn’t tolerate the IH medication. Johns Hopkins and Weill Cornell have great programs for intracranial hypertension. I hope you find help soon!

hi, i just want to ask, why are you wearing a neck brace? do you also have cervical problems? i am wearing a cervical collar too, i also think i have an EDS because I qualified a lot of criteria on your checklist. too bad EDS is not common in the philippines..

Out of curiosity, do you have the MTHFR mutation?

@HealingWithRachael

4 жыл бұрын

I have not been tested for that!

@jessicajenks4075

4 жыл бұрын

Rachael Elizabeth you should get it done. I have EDS, POTS, degenerative disc disease, scoliosis, ankylosing spondylitis, and the list goes on and on and I have the two worst variants of MTHFR. It basically causes your body to go toxic if you consume non-methylated folic acid, (folate), cobalamin, etc and it was explained to me by a Lyme specialist (because I thought I had Lyme before I got all of my diagnosis) that the variants of the mutation I have cause EVERY form of cancer. I had precancerous polyps removed from colon and stomach a few years ago at the age of 38!

Does this mean cEDS was ruled out for you?

@HealingWithRachael

5 жыл бұрын

Darby Teander not yet! we’re still waiting on the genetic testing results, it’ll probably be about one month. she thought it was only a small chance, though. so unless anything is abnormal i have hEDS!

Is it just a coincidence that you are wearing a black and white striped shirt while talking about a condition with a zebra mascot?

Who was your genetic doctor. I have Chiari and was told I have Heds and want to see one. I live in NC

@HealingWithRachael

5 жыл бұрын

So I actually live in Utah and I went to see a geneticist there. I’m not sure if any in NC, but you may want to check out some EDS facebook groups for doctor recommendations ☺️

Did u have EDS symptoms before all this occurred?

@mlapointej

Жыл бұрын

You are born with EDS, the symptoms can ramp up later in life though and not have been as many or as intense earlier in life

Good video BUT you’re not miked well. Soft voice hard to hear!

@HealingWithRachael

5 жыл бұрын

sorry about that!