In medical school doctors are taught, “When you hear hoof beats think horses, not zebras.” The phrase is meant to caution doctors and prevent misdiagnosis. The most common answer is probably the right one. In general, this seems like pretty good advice, but sometimes hoof beats mean zebras. When it comes to diagnosis, sometimes the most common answer isn’t the correct one. In medicine, the term zebra refers to those with rare illnesses. Ehlers Danlos Syndrome is rare, so the zebra has been adopted as our mascot. We use it as a tool to remind our doctors that even though zebras are rare (here anyway), they do exist.
So, how do you know when you have a zebra in your midst?
Our faulty collagen can make us very flexible.
Our faulty collagen causes our joints to be loose and have a greater than average range of motion, sometimes referred to as being double jointed. This causes instability and can result in regular dislocations and partial dislocations called subluxations.
EDS can cause hearing and sight loss (but our stretchy vocal chords may help is sing better!).
Our skin can be very soft, stretchy and fragile. It is slow to heal and atrophic scarring is common. We may have extensive stretchmarks. Our weak blood vessel and capillary walls often leave us covered in bruises. We flush easily with heat or stress.
Mast Cell Activation Disorders are not uncommon in people with Ehlers Danlos, so we regularly experience rashes of all kinds.
Mast Cell Activation can also cause anaphylaxis, cardiovascular issues, neurological issues, respiratory issues and gastrointestinal issues. EDS and POTS can also cause gastrointestinal symptoms like bloating, abdominal pain, diarrhea, constipation, vomiting, and paralysis of the the stomach or intestinal tract (gastroparesis). Some patients can control symptoms with diet changes while others may require a feeding tube.
May EDSers also have Postural Orthostatic Tachycardia Syndrome. POTS can cause our blood to pool in our legs, shakiness, dizziness, fainting, and a love for all things salty (salt helps bring our low blood pressure up and helps our bodies retain water which helps to normalize our low blood volume). We may carry salt pills or our own salt shaker around with us just in case we need a boost.
You may also be able to spot us by our supplies. Ace bandages, braces, heating pads, pillows, cushions, canes, walkers, wheel chairs, crutches, casts, shower chairs, reacher grabbers, masks, noise reducing headphones, ext. Things we use to relieve pain, give extra support, and make our tasks more manageable.
On good days, many of us look just like you. Sometimes this can present a challenge for us, as we are often thought to be fakers or people taking advantage of resources utilized by those with different abilities (like handicap parking spaces). So, remember not all handicaps are visible all the time, and be nice.