Having a rare disorder is life changing but having as many as I have the hardest part of being alive for me is because of my weight and how much I have to watch that I don’t get even larger and how much I fight depression and often suicidal thoughts because of how I have been treated by society because I’m overweight. If you struggle with your weight, then you know exactly what I mean by this.
Bone deformity, and bone pain.
Platypnea-orthodeoxia This is caused, for me, because of a hole that I have in my heart that I was born with. The hole opens and closes depending on the position my body is in. I have been told by my heart doctor that less than 30 people in the world have this disorder. I would call that pretty rate. The symptoms occur when the patient is upright, sitting up or standing, and go away quickly when the patient lays down. I will share more about this syndrome in another post.
Chiari type 0, a newly identified form of Chiari, describes the absence (or a “zero” herniation) of the tonsils below the foramen magnum. Yet Chiari 0 includes the presence of both symptoms and a syrinx in the spinal cord. This new type is under study and controversial.
Mast Cell Activation Syndrome (MCAS) Mast cells are allergy cells responsible for immediate allergic reactions. They cause allergic symptoms by releasing products called “mediators” stored inside them or made by them. ... Sometimes mast cells become defective and release mediators because of abnormal internal signals. This is not the same as having hay fever or being allergic to grass. Anything at any time can cause an allergic reaction, even if it has never caused one for you before. Also, stress, pain, depression, and fatigue can cause a MCAS that takes days to weeks to clear up.
• Gastrointestinal tract symptoms: diarrhea, nausea with vomiting and crampy abdominal pain.