My name is Hannah, I have Ehlers Danlos Syndrome (Classical and Kyphoscoliosis type), Postural Orthostatic Tachycardia Syndrome, Bilateral Bronchiectasis, Asthma and Fibromyalgia. My Name is Hannah,
I have Ehlers Danlos Syndrome (Classical and Kyphoscoliosis type),
Postural Orthostatic Tachycardia Syndrome, Bilateral Bronchiectasis, Asthma, Achalasia, Gastropariesis, Gut Dismotility and Fibromyalgia. The Ehlers Danlos Syndrome (EDS) affects almost every system in my body, it has given me profound hearing loss, stomach problems (To the point where I now have a feeding tube and can't keep any food in my stomach) and muscle weakness. I use a wheelchair and I dislocate my joints and am in pain on a daily basis and I wear splints to prevent dislocations. The Postural Orthostatic Tachycardia Syndrome (POTS) means my Autonomic Nervous System is faulty and doesn't react to gravity very well; If I stand up my blood goes to my feet and the heart tries to beat without enough blood causing it to beat too fast (Tachycardia), this causes my Blood pressure to drop and I faint. The Bronchiectasis means that my lungs are scarred and dilated meaning it obstructs my airways and I can't clear the secretions from my lungs, this means I get recurrent infections which can cause more scarring and it goes around in a cycle. I call myself Zebra because I have a number of rare conditions and medical students are taught this saying "When you hear hoof beats think horses not zebras" meaning look for the common reason for this set of symptoms. This is why people with rare conditions call themselves zebras because we are the rare explanation for a set of symptoms
I can't work but I volunteer as a Guide leader
