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disability.md

Disability

Information, resources, and products.

s.gwen.run/disability

Table of Contents

Organizations

Information

Reference charts

Academic articles

Long-Covid

EDS

POTS/dysautonomia

Providers

Los Angeles area

EDS

POTS / Dysautonomia

  • Dr. Oana-Maria Penciu (Cardiologist, USC Keck Pasadena) does a good job of listening to patients and works with them to treat dysautonomia, but seems to be somewhat misinformed about the differences between different dysautonomia conditions.
  • Dr. Hilary Brown (Physical Therapist, USC) knowledgeable about POTS and EDS, and the relevant physical therapy programs. Bio specifically mentions trans people (in the context of pelvic floor therapy). Good therapist. Does not do measurements for wheelchairs.

MCAS

Diagnostics

Dysautonomia / POTS

The evaluation for dysautonomia first involves a bunch of tests to rule out other conditions, then orthostatic testing to see if you meet the criteria for POTS, IST, OH, or VVS.

  • Bloodwork to rule out anemia.
  • 24hr heart monitor for 5 days to a month, depending on the doctor (USC Keck uses the Zio Patch sticker, and many people have skin reactions to the adhesive).
  • Brain MRI to rule out physical brain defects.
  • ECG (electrocardiogram), which is an ultrasound of the heart, to check for structural defects.
  • Tilt Table Test, to distinguish between POTS and other dysautonomias. Note that in reality people can have multiple different dysautonomia conditions together, but the TTT guidelines make them mutually exclusive, and the TTT has a very high false-negative rate because people's symptoms vary day by day. If you do need to schedule one, try to do it in the morning, since usually people are a bit more symptomatic then.

You can do the Poor Man's Tilt Table Test (PMTTT) and NASA Lean Test at home, if you have a device to track your heart rate and blood pressure. They have a higher false-negative rate than the "real" Tilt Table Test, so if you get results that indicate POTS with one of them, you don't need an actual TTT. If you get a negative result on them, then you might want to do the actual TTT, which in theory is more sensitive (has a lower false negative rate)---but this depends on the people doing the test actually following the best practices, which they often do not.

EDS / HSD

  • Most kinds of EDS have genetic markers they can test for, but the huge exception is hEDS (Hypermobile EDS), which comprises about 60% of total EDS cases but does not have known genetic markers.
  • The Beighton Scoring System is commonly used to assess joint hypermobility, and it is widely used by doctors when evaluating patients for hEDS similar conditions. However, it isn't actually a very good diagnostic test, because it was originally invented to conduct large scale population surveys to estimate rates of hypermobility in different demographics. It's not designed to be accurate, it's designed to be quick to do, so it has a super high false negative rate.

MCAS

  • Bloodwork testing for antibodies to check for normal allergies and/or autoimmune diseases.
  • ???

Mobility aids

Canes

  • Royal Canes has a wide selection of pretty and stylish canes.
  • Ta-da stick cane chair it's a cane that turns into a chair! This is their original model, they have a newer one that holds more weight, but isn't spring loaded and it's heavier so I prefer the first one.

Rollators / Walkers

  • Just Walkers has walkers and rollators (a rollator is a walker with wheels and a seat). I recommend the Drive Duet Rollator, which doubles as a transport chair (so that somebody can push you).

Wheelchairs

Ideally you want a custom fitted manual chair for best ergonomics, button a pinch you can get a standard hospital share for less than $200 USD.

Other

Travel Bags

Airlines are infamous for breaking wheelchairs and other mobility aids. Travel bag specially made for this purpose can help.

I haven't tried either of the bags below, but they have appropriate dimensions for my own mobility devices.

Household accommodations

  • Rolling stool (Mineloff) helpful for conserving energy while doing tasks, especially in the kitchen.
  • Shower chair for conserving energy in the shower. Honestly a must-have for anyone with dysautonomia.

Wearables

  • The Polar H10 chest strap is the most accurate heart rate monitor on the consumer market, however Diana and I have discovered that if two people in the same household each have their own, it causes weird connectivity issues, so I can't really recommend it.
  • The Polar Verity Sense arm band, compatibile with the Visible App, is probably the best optical heart rate sensor on the market. Cons: Relatively short battery life (under 24 hours so you have to charge every night). Annoying charging mechanism (it snaps into a cradle which has a USB plug).
  • The Visible 2.0 Band is an updated version of the Polar Verity Sense designed for the Visible App. It works very well. Cons: Only works with the Visible App, which has an expensive monthly fee. Can't be turned off, which is kind of annoying imo.
  • The Withings BPM Connect is a pretty good blood pressure cuff that my cardiologist recommended. Cons: It sometimes is finicky about syncing data to the app, but it usually gets it after a while, and when you take a reading it also displays the results on the actual device.

Compression gear

Compression gear can be used for a couple different things:

  • To help with pain. For this, you can get compression gear for pretty much anywhere you experience pain. Socks for the feet, gloves for your hands, and braces for various other joints.
  • To help with blood flow / circulation with dysautonomia. For this, knee-high compression socks are the most common option, but in theory compression tights work even better, and some people even wear corsets just to really squish your blood all the way up into your head.

Socks

For cute non-medical socks, just go to Sock Dreams.

For POTS and similar dysautonomias, it’s recommended to wear knee-high socks with at least 20-30 mmHg of compression to help squish the blood out of your legs back into your brain. 30-40 mmHg is even better. 15-20 mmHg helps a bit, but isn’t really enough for intensive activity. However, the 15-20 mmHg socks are better than nothing if you want to prioritize comfort (wearing high-mmHg compression socks for a long time can start to hurt). Note that you're technically supposed to take them off while you're lying down, but in practice this isn't an issue unless your feet start hurting and/or going numb. Maybe don't sleep in them.

If you just want compression socks to help with chronic pain in your feet / legs, 15-20 mmHg or less is totally fine.

Online retailers, in descending order of available compressive strength:

  • Vim & Vigr has a good selection of compression socks with cute patterns; they are high quality, and on the pricey side. Most of their socks are available in 15-20 mmHg and 20-30 mmHg, but they do have some that go up to 30-40 mmHg. Vim & Vigr also sells compression tights, which are better than socks for POTS but can be uncomfortable if you have tummy issues.
  • Bombas has fairly comfortable compression socks in solid colors, available in 15-20 mmHg and 20-30 mmHg.
  • Bibipins has a collection of compression socks with cat ears and such, in the 15-20 mmHg range. The store is owned by a disabled trans person of color, and their compression gear is all designed to help with chronic pain more than dysautonomia. Their compression gloves are comfortable and come in solid colors and cute patterns. They also sell braces (for hypermobile joints), gender affirming apparel like binders, and pins and stickers and such.
  • Sock Dreams has some fun patterns for compression socks, usually exclusively available in 15-20 mmHg. Most of their catalog is normal socks with fun prints.
  • Uniform Advantage mostly has low-mmHg compression, designed for otherwise healthy medical professionals who just spend a lot of time on their feet. They do have some that go up to 20 mmHg, and they come in some fun patterns.

Gloves & Braces

  • Bibipins has comfortable gloves in both solid colors and in some fun patterns. The creator is a disabled trans person of color.

Writing Utensils

Improved comfort and ergonomics for those with nerve pain / arthritis / etc.

  • PenAgain ErgoSoft (ballpoint) pens are a really funky wishbone shape that completely change the way you grip a pen in a way that's much better for people with hand and wrist pain. They take a bit of practice to get used to, but are surprisingly comfortable. Cons: the ink cartridges are small and don't last very long, and the "clicking" mechanism to retract the pen tip is a bit brittle and can break if you fidget with it too much (ask me how I know).
  • Big Fat Pens (ballpoint) are large pens that don't require as strong as a grip and allow you to write with less finger and wrist movement. They feel kind of cheap but are quite comfortable and work fine. They have a lanyard attached which is really nice if you're prone to dropping things.
  • Pilot Dr. Grip (gel) pens are a little larger than a normal pen, and a bit easier to grip and more comfortable to write with. It's not as good as the Big Fat Pens or the ErgoSoft, but the quality of the pen itself is better and they look pretty (if you care about that sort of thing).
  • Pilot Dr. Grip (ballpoint) same as above, but regular ballpoint pens instead of gel.

Content creators

  • Liv MCAS & EDS
  • Hannah Epilepsy, POTS, Hashimotos, ME/CFS, Long Covid
  • Ila POTS, Reactive Hypoglycemia
  • Jemma POTS, Long Covid
  • Sarah Todd Acute Flaccid Myelitis (spinal cord damage / partial paralysis)
  • Kit EDS, POTS, MCAS, PNES (seizures)
  • Allison EDS, POTS, Occipital neuralgia, Raynaud's, CSF leak
  • Courn EDS
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