Wanna learn more about what I have?
I was diagnosed with EDS in July of 2015. Which makes my joints very unstable and can cause pain all over my body.
EDS ( Ehlers-Danlos Syndrome)- People with with EDS have a genetic defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in patients of EDS are the result of faulty or reduced amounts of collagen. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue.
(To learn more about EDS--- http://www.ednf.org/what-eds)I was also diagnosed in May of 2016, Gastroparesis & Intestinal Motility issues.
This affects my GI system and requires me to have a feeding tube to get the proper nutrition. Currently I rely on a pump that feeds me forumla and pumps into a NJ tube that sits in my stomach. This bypasses my stomach (which is paralyzed), and I receive my food in my intestines.
I suffer from slow motility, and my GI system is failing. This makes my case very rare and very hard to treat. There is little treatment but there is ways to give me a better quality of life to manage the condition.
Gastroparesis - literally means paralyzed stomach. It is one of the most severe and complicated gastric motility disorders. (https://www.g-pact.org/gastroparesis)
I also have a few Intestinal Motilty issues--- (https://www.g-pact.org/chronic-intestinal-pseudo-obstruction) and many more.
I was diagnosed with Chiari Malformation in late 2012. I had brain surgery in April of 2013 to correct my chiari.
Chiari Malformation is a brain abnormality, where your brain sags into the spinal cannel and pushes against your brain stem, restricting the flow of your spinal fluid. This causes many problems, most people suffer from many things. Headaches, Dizziness, Pain, Off balance and many more.
(To Learn more about Chiari---- http://www.conquerchiari.org/ )
In the early months of 2015, I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome ) a form of dysautonomia.
POTS affects the autonomic nervous system that controls blood pressure and heart rate. While standing my heart rate beats 30 more, causing me to faint or pass out. Normal healthy people heart rate is usually around 50-70.
I have been diagnosed with Tachycardia, because my heart rate sticks at a normal 100 beats per minutes, resting.
With POTS, I also have Autonomic Neuropathy. Autonomic Neuropathy is a nerve disorder that affects involuntary body functions, including heart rate, blood pressure, perspiration and digestion.
(To learn more about POTS and Dysautonomia----- http://www.dysautonomiainternational.org/ )
(The truth about POTS: http://dysautonomia.weebly.com/if-you-know-someone-with-dysautonomia.html)
Sadly, all these conditions piggy back ride each other and usually make one another worst than it really should be. They all affect me differently.
I have been diagnosed with Tachycardia, because my heart rate sticks at a normal 100 beats per minutes, resting.
With POTS, I also have Autonomic Neuropathy. Autonomic Neuropathy is a nerve disorder that affects involuntary body functions, including heart rate, blood pressure, perspiration and digestion.
(To learn more about POTS and Dysautonomia----- http://www.dysautonomiainternational.org/ )
(The truth about POTS: http://dysautonomia.weebly.com/if-you-know-someone-with-dysautonomia.html)
Sadly, all these conditions piggy back ride each other and usually make one another worst than it really should be. They all affect me differently.
