Hope and Healing for Kelsey
Donation protected
Hi there! My name is Kelsey McGuire, and I’m 25 years old.
All of my life I’ve struggled with my health. From a young age, I became accustom to seeing many doctors and specialists, and missed a lot of school due to my poor health. I’ve had migraines since age 5, and when they became worse and more symptoms began appearing, everything was blamed on them. Doctors were stumped, so they came up with the easiest explanation they could think of.
By spring of 2016, I became bed bound. It was just short of my first wedding anniversary, and all of the sudden my husband was having to take care of me. I was having fainting spells daily, tachycardia (fast heart rate), dizziness, nausea, chronic body pain, and more. I couldn’t accomplish even the most mundane tasks, such as cooking a meal, washing dishes or folding laundry. We were constantly at the doctors and emergency rooms looking for answers.
The following year was a continuous whirlwind of doctors appointments and tests, and I was diagnosed with postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and finally the reason why I’m asking for your help... hypermobility type ehlers danlos syndrome (EDS).
Ehlers danlos syndrome is a genetic connective tissue disease. Connective tissue is like the glue that holds our bodies together. The syndrome is characterized by easy bruising, joint hypermobility, stretchy skin, soft velvety skin, and frequent dislocations or subluxations (partial dislocations). It is currently characterized as a rare disease, and as a result, very little research is being conducted on it.
While I experience many symptoms due to the EDS, my most debilitating symptoms are severe headaches and migraines, neck pain, weakness, dizziness, inability to hold my head upright for any length of time, fatigue, memory loss, poor balance, and difficulty swallowing.
Due to the generosity of the community, friends and family, I was able to travel to the surgeon in the states for testing. I was diagnosed with atlanto-axial and craniocervical instability. This means my vertebrae in my neck are all very loose, and my neck is dislocating every time I turn it. It’s therefore compressing my spinal cord and brain stem. Surgery has been recommended to fuse my spine, so it will stop further damage and reduce my symptoms. Unfortunately, it’s been since October 2018, and surgeons in Canada are unable and unwilling to do this surgery... My quality of life is continuing to decline, and we are desperate to get me help. So we are turning to fundraising to try to get me to the United States, for the surgery that is so desperately needed.
Thank you all so much for reading this far along. I appreciate your love and support more than you can imagine. Thank you for helping me reach my goal of becoming a healthier me!
Love and hugs,
Kelsey
All of my life I’ve struggled with my health. From a young age, I became accustom to seeing many doctors and specialists, and missed a lot of school due to my poor health. I’ve had migraines since age 5, and when they became worse and more symptoms began appearing, everything was blamed on them. Doctors were stumped, so they came up with the easiest explanation they could think of.
By spring of 2016, I became bed bound. It was just short of my first wedding anniversary, and all of the sudden my husband was having to take care of me. I was having fainting spells daily, tachycardia (fast heart rate), dizziness, nausea, chronic body pain, and more. I couldn’t accomplish even the most mundane tasks, such as cooking a meal, washing dishes or folding laundry. We were constantly at the doctors and emergency rooms looking for answers.
The following year was a continuous whirlwind of doctors appointments and tests, and I was diagnosed with postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and finally the reason why I’m asking for your help... hypermobility type ehlers danlos syndrome (EDS).
Ehlers danlos syndrome is a genetic connective tissue disease. Connective tissue is like the glue that holds our bodies together. The syndrome is characterized by easy bruising, joint hypermobility, stretchy skin, soft velvety skin, and frequent dislocations or subluxations (partial dislocations). It is currently characterized as a rare disease, and as a result, very little research is being conducted on it.
While I experience many symptoms due to the EDS, my most debilitating symptoms are severe headaches and migraines, neck pain, weakness, dizziness, inability to hold my head upright for any length of time, fatigue, memory loss, poor balance, and difficulty swallowing.
Due to the generosity of the community, friends and family, I was able to travel to the surgeon in the states for testing. I was diagnosed with atlanto-axial and craniocervical instability. This means my vertebrae in my neck are all very loose, and my neck is dislocating every time I turn it. It’s therefore compressing my spinal cord and brain stem. Surgery has been recommended to fuse my spine, so it will stop further damage and reduce my symptoms. Unfortunately, it’s been since October 2018, and surgeons in Canada are unable and unwilling to do this surgery... My quality of life is continuing to decline, and we are desperate to get me help. So we are turning to fundraising to try to get me to the United States, for the surgery that is so desperately needed.
Thank you all so much for reading this far along. I appreciate your love and support more than you can imagine. Thank you for helping me reach my goal of becoming a healthier me!
Love and hugs,
Kelsey
Fundraising team (2)
Kelsey McGuire
Organizer
St. Thomas, ON
Kim Robins
Team member
