The Two Demons
Ehlers-Danlos Syndrome; also called, EDS, is a rare inherited disorder that affects the skin, joints, and blood vessels. Symptoms include overly flexible joints that constantly dislocate, skin that's elastic like and bruises easily, and blood vessels that pop.
Postural Orthostatic Tachycardia Syndrome, also called POTS, a syndrome usually triggered when a person stands up after lying down. Symptoms include lightheadedness, fainting, and rapid increase or decreased heartbeat, and losing vision.
Our Amazing, Brave, and Beautiful Niece
Maile (My-lee) Madsen has been suffering from both of these cruel, incurable diseases since birth. In Maile’s twenty-two years she has been misdiagnosed with Juvenile Rheumatoid Arthritis, Leukemia, Fibromyalgia, Depression, and Hypochondria. Because EDS is so rare and difficult to diagnose, it made it hard to find a doctor that would take her symptoms seriously. It has been incredibly difficult on her family to watch her suffer with few answers and even fewer solutions. As her symptoms have continued to worsen, Maile has lost the ability to play tennis and dance hula, both of which she enjoyed participating in for years.
Throughout her life she has had multiple broken bones, two shoulder surgeries, one hip surgery, three hand surgeries, as well as multiple injections and epidurals. She has to wear braces on each of her knuckles to keep them in their joints. The most mundane daily task is all but impossible due to pain. Can you imagine having ALL your joints dislocate on a consistent basis, your knuckles turning in on themselves which makes using your hands excruciating, your tailbone and hip in constant rotation causing so much pain it’s difficult to walk? And on top of all of that, passing out randomly due to your heart rate rapidly dropping just from standing up resulting in all forms of injuries.
The Next Fight
Despite all of this, Maile is fighting, every single day. In order to manage her disease she requires a whole team of specialists: a geneticist, immunologist, cardiologist, orthopedic specialists, prosthetics specialist, a pain specialist, neurologist, physiatrist, rheumatologist, three physical therapists, an occupational therapist, and a massage therapist. Despite working two or more jobs since she was 17, Maile is struggling to cover her ever-growing medical expenses; which will only continue to increase. Maile, like most folks with EDS, has been told that she will eventually end up in a wheelchair.
Maile recently saw her geneticist who needs to run further genetic testing to rule out vascular EDS, which has a whole host of further complications and severe symptoms. She needs to see the immunologist because they believe she may also have Mastocytosis. People affected by mastocytosis are susceptible to itching, hives, and anaphylactic shock, caused by the release of histamine from mast cells. In addition, Maile is due to see her hip surgeon again; her hip is dislocating and is pinching her nerves so she can’t feel her legs anymore. And her back specialist is recommending prolotherapy.
Join Maile’s Army
Every little bit helps. A donation of any amount will make a difference. By standing by Maile with a donation, you help with these priorities:
·Upcoming costs for consultations with her immunologist and geneticist.
·Prolotherapy, which is currently not covered by insurance.
·Emergency Room Bills, as a result of Maile passing out and related injuries.
·Inevitable surgeries that will be required for Maile to maintain a measurable quality of life
We need your help to mitigate Maile’s suffering now. By so doing, we all get more of her beauty, wit, mesmerizing smile, and reluctant chuckles. Maile has thousands of dollars in medical expenses she's paying for and has thousands more upcoming. Every little bit helps. We thank you for your consideration to stand by Maile. If you can, please share Maile’s GoFundMe on your social media profiles as well. Thank you again!
For more on Maile’s journey, you can hear about life with EDS in her own words at Fight Like a Zebra
Did you know? People with EDS identify themselves as Zebras. Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis. Unfortunately, those that suffer from EDS, are the Zebras that often get overlooked.
More links and information:
What is Ehlers-Danlos?
What is POTS?
What is Mastocytosis?
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