Jessi’s Journey

I am a rare disease warrior. I fight every day of my life to do simple things others take for granted. I have Hypokalemic Periodic Paralysis & Ehlers Danlos Syndrome. Hypokalemic Periodic Paralysis is a rare neuromuscular disease that affects only 1 in 200,000 and there is no cure. My potassium quickly moves from my blood stream to my muscles dropping my serum potassium levels quickly and resulting in emergency medical treatment. HKPP causes me to have tachycardia and my heart often beats near 200 beats per minute during an attack. My potassium has been low enough to put me in critical condition and in critical care in the hospital as it dropped my potassium levels in the low 2’s and caused SVT’s. Any muscle in my body can become paralyzed during an attack, including my diaphragm, making me unable to breathe unassisted. This is a life threatening emergency as well as the cardiac arrest that can occur during an attack. I have had large muscle areas become paralyzed during attacks and have woke up from sleeping unable to move my arm, leg, hip muscles or toes. I shake uncontrollably from weakness during an attack and become nauseous with the worst headache imaginable. The attacks leave my muscles extremely weak which takes days to recover from. I have permanent muscle weakness in my neck, legs and shoulders due to the repeated attacks.

I was just recently diagnosed with Ehlers–Danlos syndrome (EDS). Ehlers Danlos syndrome is a group of genetic connective tissue disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues. EDS causes severe joint and muscle pain often leading to disability. Symptoms such as functional bowel disorders and incisional hernias occur and the joints and skin are most commonly affected. My joints have a wide range of movement, are unstable, and tend to dislocate frequently. When I take a deep breath or laugh my ribs move in and out of place. My left shoulder dislocated and subluxed 27 times before my surgery. My hips dislocate a couple times a day simply from walking and now my finger joints are popping in and out on my right hand. I easily bruise and the blood vessels in my face, around my mouth and chin often burst with out any trauma. My ear drum has also ruptured while sitting in class. Neither of my genetic diseases affect the way I look or my intelligence and its difficult when people have a predisposed idea of what “sick” looks like. I am appreciative of the understanding from those around me & those who have been by me on my journey of rare disease.

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I am a rare disease warrior. I fight every day of my life to do simple things others take for granted. I have Hypokalemic Periodic Paralysis & Ehlers Danlos Syndrome. Hypokalemic Periodic Paralysis is a rare neuromuscular disease that affects only 1 in 200,000 and there is no cure. My potassium quickly moves from my blood stream to my muscles dropping my serum potassium levels quickly and resulting in emergency medical treatment. HKPP causes me to have tachycardia and my heart often beats near 200 beats per minute during an attack. My potassium has been low enough to put me in critical condition and in critical care in the hospital as it dropped my potassium levels in the low 2’s and caused SVT’s. Any muscle in my body can become paralyzed during an attack, including my diaphragm, making me unable to breathe unassisted. This is a life threatening emergency as well as the cardiac arrest that can occur during an attack. I have had large muscle areas become paralyzed during attacks and have woke up from sleeping unable to move my arm, leg, hip muscles or toes. I shake uncontrollably from weakness during an attack and become nauseous with the worst headache imaginable. The attacks leave my muscles extremely weak which takes days to recover from. I have permanent muscle weakness in my neck, legs and shoulders due to the repeated attacks.

I was just recently diagnosed with Ehlers–Danlos syndrome (EDS). Ehlers Danlos syndrome is a group of genetic connective tissue disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues. EDS causes severe joint and muscle pain often leading to disability. Symptoms such as functional bowel disorders and incisional hernias occur and the joints and skin are most commonly affected. My joints have a wide range of movement, are unstable, and tend to dislocate frequently. When I take a deep breath or laugh my ribs move in and out of place. My left shoulder dislocated and subluxed 27 times before my surgery. My hips dislocate a couple times a day simply from walking and now my finger joints are popping in and out on my right hand. I easily bruise and the blood vessels in my face, around my mouth and chin often burst with out any trauma. My ear drum has also ruptured while sitting in class. Neither of my genetic diseases affect the way I look or my intelligence and its difficult when people have a predisposed idea of what “sick” looks like. I am appreciative of the understanding from those around me & those who have been by me on my journey of rare disease.

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