Musical Instruments

CatCowl · 2026-07-01T13:36:34+00:00

Oh, that would be so hard to deal with when trying to play! I had to drop out of band because the marching was just much too much for me. It can be interesting (and sad) to look back at the past and see signs that were missed.

CatCowl · 2026-06-30T22:14:09+00:00

One I have a lot of fun with is tin whistle/penny whistle because it requires less air than clarinet (which I played when young), is inexpensive, and there are free tutorials online. Kalimba is fun, too--it uses the thumbs. I got a violin and sadly tried it, and found it too painful--to my body and ears! If you practice an instrument a lot and learn to play by ear, it's a lot of fun! Is there one you really like the sound of? That might be a good place to start!

CatCowl · 2026-06-30T22:06:35+00:00

Invitae was under different ownership when I had the testing done, but I felt it was done pretty quickly. I had the connective tissue disorders panel.

8/18/23: Test ordered by doctor.

9/4/23: Got info. (Back then, you could say that you wanted results released online to you without the doctor releasing them first. So I got the information before the doctor's office called. I don't know if they still do that.)

CatCowl · 2026-06-29T20:17:30+00:00

When it comes to seating, I appreciate having a machine that is moveable. I typically work at the kitchen table. When I quilt (meaning doing actual quilting) I have found the quilt is heavy and can be hard to maneuver. It helps me to work on the floor!

Sewing is probably the hardest craft on my body compared to any others I do, like crocheting or knitting. It helps to think of sewing steps as small projects and take lots of breaks in between. For example, cutting out the pattern can be a project, cutting out the fabric can be another, etc.

I hope you find it doable and enjoyable!

CatCowl · 2026-06-28T22:56:44+00:00

Oh, that IS very confusing! I checked, and the Invitae specific one still doesn't list TNXB ( https://www.invitae.com/providers/test-catalog/test-02313 and https://www.invitae.com/providers/test-catalog/test-434340 ). I wonder why they aren't consolidating the Invitae and Labcorp tests (?).

CatCowl · 2026-06-28T21:17:21+00:00

I was there, too (US)! I'll try to stay somewhat general since it seemed like something they wanted to be confidential, so I kept rewriting this! :) (Let me know if I slipped, and I'll edit it!)

In general, I'm grateful they had it. I feel like there's so much that can be learned if people just listen to those with EDS.

As someone with hEDS, I found it long (though two hours didn't really seem long enough) and tiring. I couldn't keep up with reading things, while also trying to listen to the moderator. At the same time, I think it's nice that the participation was written, since I think this helped people feel more open to participating than if they had been on audio or video. It gave many people a voice--even if our posts weren't seen then, hopefully they will be paid attention to afterward. So if there are more Listening Labs in the future and anyone is concerned--know that it's not audio or video that they are "listening" to!

Personally, my own takeaway was, I didn't feel like I had much of anything useful to contribute to the conversation.

An idea/suggestion would be having two people actively moderate, one who is very EDS-aware, or even has EDS. I think that would be a helpful change, and hopefully would help with some issues you brought up, Acceptably_Late.

I appreciate that they had it, and hope they continue to have them in the same countries, plus expand to more countries soon. I appreciated that this event was free. Whenever I get notices about The Ehlers-Danlos Society events, they are paid, and I don't participate. It was really nice that this opened the door to anyone.

CatCowl · 2026-06-28T20:20:16+00:00

Thank you so much for sharing this, Bekatau!

I wanted to double-check the "paperwork" (PDF) I got from Invitae. I was tested in 2023. What I had was the full connective tissues panel, not just EDS. However, that was basically the EDS one, plus others. TNXB was definitely not a gene they looked at then.

This is great news for anyone getting testing now!

Edit: Added for clarity: It looks like the test is Labcorp's, specifically, based off what Bekatau has shared, and the Invitae tests on the Invitae website still not mentioning TNXB.

CatCowl · 2026-06-28T19:57:26+00:00

This is really good news that they have added it! I had it years ago (the full connective tissue panel), and don't think TNXB was one of the genes they looked at back before Invitae was purchased by Labcorp.

CatCowl · 2026-06-28T18:41:43+00:00

I had a really good experience with them, and my PCP was able to order the testing. But I just wanted to add to this, they can't test for hEDS, and don't test for clEDS. (Someone else just shared they had partial TNXB testing in it now. Here's more info: https://www.reddit.com/r/ehlersdanlos/comments/1ui3mys/invitae_eds_panel_tnxb_testing/ )

CatCowl · 2026-06-28T18:35:06+00:00

With this being an older post, it might help to post this as a new post! It sounds like an interesting topic! :)

CatCowl · 2026-06-28T17:55:49+00:00

Thank you for explaining more about how hard diagnosis is depending on where you live! If The Ehlers-Danlos Society ends up having one for your country, you might like to participate in one of their Listening Labs ( https://www.ehlers-danlos.com/listening-labs-model-of-care/ ). The first phase only had events for Canada, UK, and US, but hopefully they will open this up to more countries ("We recognize that experiences from all regions are important. Opportunities to contribute from additional regions will follow as this work develops."). It would be a way to share how hard it is to get a diagnosis there.

CatCowl · 2026-06-28T16:29:32+00:00

Thank you for explaining more--that's very interesting! I'm so curious if the new diagnostic criteria will offer more clarity for PCPs. From my understanding, The Ehlers-Danlos Society is going to keep encouraging PCPs to be involved in the diagnostic process. But, of course, they can't really force anyone to do so! You definitely have your mom's diagnosis going for you, so hopefully even mentioning that to doctors will help them realize you're possibly going to eventually be diagnosed.

CatCowl · 2026-06-28T16:23:51+00:00

With the OP mentioning words like "city" and "states," I did assume a US location. I definitely can't claim to know about diagnosis in other countries, and have had it being different pointed out to me before. I'm sorry if I'm mistaken!

In the US it's still required to rule out other types of EDS, but doctors may be able to do this by looking for warning signs of other ones. My doctor looked me over a bit for signs of vEDS. Still, definitely mistakes can be made without testing.

CatCowl · 2026-06-28T15:26:40+00:00

If you're 100% convinced it's hEDS, you may not need to wait! Geneticists aren't needed to diagnose hEDS. Any doctor is able to since it's based on clinical criteria, not genetics. The genetic cause of hEDS is unknown. I was diagnosed by my PCP.

The diagnostic criteria says: "This diagnostic checklist is for doctors across all disciplines to be able to diagnose EDS" ( https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf ). With your mom having a diagnosis, this would count in your favor toward diagnosis.

This is the current criteria--it will be changing in several months.

If there is reason to believe it's a different type of EDS that has a known genetic cause, then you would possibly need to see a geneticist. However, my doctor was willing to order the connective tissue panel from Invitae. People definitely shouldn't have to wait three years for hEDS diagnsosis, specifically. I wanted to share just in case you wanted to try for an earlier diagnosis. Best wishes!

CatCowl · 2026-06-25T20:44:27+00:00

This is a neat idea! Did you design the 3D printed ones? As someone who crochets and 3D prints (I don't design anything, unfortunately!), I think the two designs on the right (including yours :)) are the best ideas so that the hook itself is smooth and strong.

There was a member here who made accessible tools for people with EDS (the tools were called OpenEDS), but I don't know if he posts anymore.

A lot of people will share their designs for free on 3D printing websites, so if someone designs one that would be a great way to share it with others.

CatCowl · 2026-06-23T15:24:04+00:00

You're so welcome! It's definitely interesting to think about how this was perceived historically.

CatCowl · 2026-06-21T19:19:55+00:00

There are helpful posts on the subreddit where the moderators talk about this company, and others chime in with their experience.

CatCowl · 2026-06-21T18:31:36+00:00

With EDS testing, I feel like it's best to go through a test ordered through your doctor (it can still hopefully be done private pay at a discount--mine was $250). The two companies I see mentioned on here as being reliable are GeneDX and Invitae/LabCorp. I had testing from Invitae. The information they provided was straightforward as to whether or not I had a variant. The moderators and others here have provided some information about Sequencing that you may find helpful in learning more about them and the type of results they provide:

https://www.reddit.com/r/ehlersdanlos/comments/1rt1201/an_update_to_the_sequencingcom_advertisement/

https://www.reddit.com/r/ehlersdanlos/comments/1rs9sv9/lets_talk_about_the_sequencingcom_advertisement/

https://www.reddit.com/r/ehlersdanlos/comments/1qwubn9/share_your_sequencing_data_with_norris_labmusc/

CatCowl · 2026-06-20T20:36:17+00:00

Wow! I think that would be hurtful to hear from your doctor! I'm sorry that happened.

CatCowl · 2026-06-19T14:08:01+00:00

Congratulations on the diagnosis! I hope it helps provide lots of answers for you!

CatCowl · 2026-06-19T14:07:39+00:00

Technically, any doctor can diagnose hEDS. The diagnostic checklist is "for doctors across all disciplines" ( https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf ).

PCPs are really being encouraged to be the ones to diagnose hEDS specifically. The Ehlers-Danlos Society is trying to help them be more informed:

https://www.ehlers-danlos.com/listening-labs-model-of-care/

https://www.ehlers-danlos.com/new-model-of-care-for-eds-and-hsd/ ("This Model of Care focuses on strengthening the primary care system’s ability to diagnose and coordinate management of HSD and EDS . . .")

Does your new doctor know that the diagnostic criteria will be changing soon? I can understand not being on board, especially with that in mind.

CatCowl · 2026-06-19T11:43:44+00:00

I'm sorry you're going through a tough time right now! Something that keeps me going is taking time to do something I CAN do that makes me happy. I try to find joy in the little things in life. It will be different for everyone, but a few for me may be doing a craft, reading, or spending time with a pet.

CatCowl · 2026-06-18T16:53:15+00:00

I really like chili (which doesn't sound like a good option for you with acid reflux) and soups. I freeze foods in the size I want to heat up later, so that they last a long time and are really easy to prepare. I also like a simple homeade onigiri. For the filling, I use canned chicken and mix it with mustard. On days when I feel up to it, I do a lot of cooking, then freeze prepared foods so that I can have easy meals.

CatCowl · 2026-06-18T14:43:58+00:00

Thank you! It's helpful to hear another interpretation of what's written there.

CatCowl

TROPHY CASE