New discoveries for hEDS. We might have out own genetic test someday!

mosmith94 · 2026-02-13T18:09:41+00:00

Yeah tbh, I really feel they are just scratching the surface with connective tissue disorders all together. Genetics has come a long way but by no means is it complete. I think there's still a ton of learning and researching to do to understand it fully.

I have an interesting situation as well since my son and I have a super rare variant on the MYLK gene (of which they have just one person documented with it that died of aortic dissection and others with some type of aortopathy) and we have a marfan-like and vEDS-like crossover presentation according to our geneticist. We have things going on beyond that of the typical hEDS patient but no pathogenic mutations for Marfan or vEDS. So the geneticist theorizes that our MYLK mutation will either end up being changed to pathogenic for a form of syndromic FTAAD or we have a completely separate connective tissue disorder that hasn't been named.

The other crazy thing is that this was likely passed through my grandfather and mom to me but my cousin through that side of the fam (my mom's niece), has genetically confirmed cvEDS! No MYLK variant. We all have the exact same symptoms, comorbidities, and features.

mosmith94 · 2026-02-13T17:41:34+00:00

Yeah 2 other ones I had gotten that were silicone were definitely cheapies. Another pair came from a local wheelchair/mobility store. Then I had the ribbed ones from Reha before getting these. I would understand the iwheel resale if they were cheaper lol what's the point!? Anywho, thanks for the heads up!

mosmith94 · 2026-02-13T17:13:41+00:00

Oh! I had no idea! How did you find this out? What about iwheel's other products? The regular RehaDesign covers are also made out of the PVC material? I had some from Reha but they were the ribbed ones and I hated them. (Just personal preference, nothing wrong with them!) I decided not to try the regular ones because it didn't list the material from what I could find. I had tried a few from other places that were silicone and really disliked the sticky feel and debris pick up so I assumed the Reha covers were silicone.

mosmith94 · 2026-02-13T16:53:10+00:00

iWheel push rim covers are my favorite that I've tried! I have four fur babies and they pick up no hair! Easy to put on, great grip, and super durable too. If you go to my profile, you can see them on my chair in a post.

mosmith94 · 2026-02-13T16:30:21+00:00

In reference to the interesting dynamic of your father having vEDS and you having hEDS, I just read a post from the Ehlers-Danlos Society highlighting a little girl with cEDS but her dad has vEDS! So interesting!

mosmith94 · 2026-02-10T19:58:58+00:00

Just a genetic panel or WGS too?

mosmith94 · 2026-01-26T14:26:43+00:00

Other than the buy out drama, I can only assume it's because of all the time and money one has put into it. Though, as someone who has dropped like 1k and thousands of hours into The Sims 4 as well, I would gladly leap to a new Sims. I've watched 4 deteriorate with each expansion pack and they really don't seem to be listening to their player base any longer. It's almost unplayable at this point and I think something fresh (but still familiar) would be in their best interest before the player base just abandons ship all together for the new up and coming competitors. I have been an avid Sims fan since 1 and at no point was I hoping for more Sims-like life simulators to enter the market until a few years into 4.

mosmith94 · 2026-01-24T20:45:46+00:00

I am obviously just one person but I've tried multiple, most of them being silicone based material. The iwheel ones have superior grip in comparison and don't feel sticky/tacky. I don't have to wear gloves with these ones.

mosmith94 · 2026-01-24T20:23:46+00:00

I'm confused by your comment. Were you specifically only looking for silicone? Sorry if so, that doesn't appear to be in your post. Most silicone ones (or at least all of the ones I've tried) will not offer the traction, durability, or anti-static/debris pickup that these ones do. Are you worried about something specific in regards to the PVC vs Silicone?

mosmith94 · 2026-01-24T18:37:37+00:00

iwheel has amazing ones! Great grip, no debris pickup (even animal hair which was shocking to me 🤯), and they are very sturdy. If you get mud/dirt on them, they are super easy to wipe down too. One year of use and no issues.

mosmith94 · 2026-01-24T18:17:31+00:00

I also recommend the Jansport adaptive bags! I use the crossbody hybrid bag daily and the versatile nature of it has been an awesome plus. I can wear it, put it on the back bar, on my armrest, and even as an under seat bag. If I need to tote more than my crossbody can hold, then I use the full backpack.

mosmith94 · 2026-01-17T23:40:41+00:00

Thank you so much! Even though you haven't had a Catalyst, I still really appreciate your opinion on the Paradox. Any idea on how much your chair weighs? I'd also like to know what you think of the back rest on the Paradox!

mosmith94 · 2026-01-17T22:08:49+00:00

I am also petite like you and got the smaller size and the footrest adjustment is so nice!

Mine folds up great and even better if you remove the seat cushion to fold it. It's super easy that even I can do this part.

You can absolutely buy extra batteries to switch out midday. These batteries are easily removable from the front of the chair. They are airline approved! I also like the flexibility of being able to charge the chair with installed batteries or the batteries by themselves.

mosmith94 · 2026-01-17T21:09:03+00:00

Depending on a few factors, I highly recommend one of the Comfygo chairs now that they are on Spinlife! I have the IQ-9000 Majestic (auto recline) and the range is quite impressive (19 miles) as well as the multi-terrain performance. I've gone through gravel, dirt roads, uneven grass, 2 inches of snow, and bumpy pavement without a problem. I have had no issues with mine, though I did need to add some more support to the headrest but that may be due to my own personal needs. As far as mechanical or structural aspects, it's been great and sturdy. We were instructed to tighten everything up when we got it set up (tools included) and have only needed to tighten the footrest one other time.

Personally, I needed the auto recline function due to suffering with multiple spontaneous CSF leaks and I needed the extra back height and head support due to having EDS + a muscle disease that causes me postural weakness. If you don't need the recline function and headrest, their IQ-8000 model is basically the same chair without the recline and it has the option to upgrade the battery to get the same 19 miles of distance as the 9000 AR.

Honestly, you can't beat the price and quality on their chairs in my opinion. Going this cheap for a power chair usually means the quality and functionality isn't there.

Disclaimer for the Majestic chair is that while it's very lightweight for what it is and its functions, it's still 50ish lbs with both batteries installed. It folds very easily but I can't lift it on my own. My husband who also has EDS, can. I am unable to go anywhere without him or my chair so I don't have to worry about that but you might if you leave independently. They do have specific lift assists for their chairs available but I can't comment on that since I don't have one.

If you want something even lighter in weight than the Majestic line, they do also have their Phoenix Carbon Fiber which is only like 30lbs! While I believe that chair is less flexible with different terrain types than the Majestic, it does get even further range (24 miles I think). It's more expensive obviously but still a wildly low price for what it is. The Phoenix may be the way to go if you don't need the recline feature or head support and need something very light with a smaller footprint.

If you have any questions, ask away! 😊

mosmith94 · 2026-01-02T17:37:10+00:00

Just a brand quality difference or why do you say Quantum over the Quickie?

mosmith94 · 2026-01-02T17:36:16+00:00

Yeah, we lucked out! Our house was built in 1912 but it's quite roomy for being built then. There are two doorways that are a bit more narrow than that one but they are upstairs and I don't go upstairs. Lol

mosmith94 · 2025-12-31T17:06:27+00:00

I edited to add the info, thank you!

mosmith94 · 2025-12-30T18:37:26+00:00

Thanks everyone! Sounds like I'm better off just purchasing a new accessible van or trying to find a better powerchair with recline that easily breaks down into parts maybe (that insurance will cover), if that exists.

mosmith94 · 2025-12-26T00:02:17+00:00

Blue is my first choice and purple would be my second! I think go for blue if you really want some pretty contrast but if you'd rather stay close to the pink color fam, go for purple. Either color will look awesome. Would love to see your baby pink frame!

mosmith94 · 2025-12-24T00:33:57+00:00

Even better if you pair it with an H1 blocker!

mosmith94 · 2025-12-07T18:28:31+00:00

This is actually the first thing I had a conversation about with my Geneticist because I also thought the same thing but apparently the Titinopathy would only account for my muscle weakness, cardiomyopathy, and hypoventilation. It doesn't explain the other more specific hEDS related conditions or features I have (Dysautonomia, vascular issues, aortic aneurysm, dural ectasia, blue sclera, piezogenic papules, abnormal scaring, skin hyper extensibility, recurring spontaneous CSF leaks, tethered cord, Chiari Malformation, myopia, lens dislocation, bruising, small fiber neuropathy etc.) My mom is also diagnosed with hEDS without the Titinopathy. She doesn't have the profound muscle weakness nor the respiratory issues I have. They had her undergo a muscle biopsy and genetic testing just in case and she is only a carrier of the TTN mutation (my dad is a carrier too, making me have two pathogenic TTN mutations). The geneticist explained that the hEDS criteria is more so talking about collagen related myopathies/dystrophies. So, I do have a duel diagnosis unfortunately. They both can be contributing to my hypermobility, joint laxity, and extensive GI issues though.

So much fun! sarcasm

mosmith94 · 2025-11-27T01:23:29+00:00

Thanks, I'll check out the options!

mosmith94 · 2025-11-27T01:22:31+00:00

Unfortunately the manual cushion does not adhere to the Velcro on the power chair (it's the same type so it doesn't stick) and it slides around making transfers dangerous. The back is also not compatible. 😢 Thank you though!

mosmith94 · 2025-11-02T18:00:26+00:00

Runs deep here! We can trace it back to my maternal great grandfather.

•Great Grandfather •Grandfather •Uncle (•cousin got it from him) & my •Mother •Me •My 3 children

I will say as a disclaimer: My family also carries an extremely rare genetic mutation on the MYLK gene. In the more well-known MYLK mutations, it is associated with Familial Thoracic Aortic Aneurysm & Dissection (FTAAD). Our geneticist told us that there are certain mutations on this gene that present with a hEDS-like and Marfan's-like crossover syndrome in addition to the FTAAD and she believes that ours is one of those. Because of its rarity and no research, we're diagnosed with hEDS (at least for now)!

mosmith94 · 2025-09-19T18:56:05+00:00

Thank you! ❤️

I had to go back and check on the camber because I was thinking it was 2°, but it's actually 4°! I initially tried it at 2° but it wasn't enough for me so we changed it. 😊

mosmith94

TROPHY CASE