Help make Maura better
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My name is Maura Weston-Lee. I suffer from a disease called Secondary Autoimmune Polyendocrinopathy, a rare life-threatening autoimmune disorder present in less than 0.1% of the world population.
It took over four years of being severely ill before I was diagnosed. During this time I was also erroneously diagnosed with Lyme Disease. As a rule, autoimmune diseases are difficult to pinpoint, as they tend to spring up as multiple seemingly unrelated symptoms. I had symptoms including gastric bleeding, migraines, multiple fractures, chronic fatigue, swollen and painful joints, frequent dehydration, and extremely low blood pressure.
I was diagnosed with secondary Addison’s disease, or adrenal insufficiency (a symptom of Polyendocrinopathy), in November 2014, after being bounced from specialist to specialist at the B.C children’s hospital for three years, and enduring blood tests, MRIs, CAT scans and multiple gastroscopies. It was my first trip to the endocrinology department. Everything seemed to finally fit into place, and I immediately began to learn about adrenal insufficiency, and the impact it would take on my life.
Earlier this year, I was referred to Medical Genetics at BCCH. They were able to see the bigger pictures, that other specialists were maybe not able to see. We’ve since then been working together to get a final diagnosis, and explore all the different symptoms and possible complications.
As a teenager, it is sometimes difficult to come to terms with the restrictions that come along with chronic life threatening illness. It is very important to be truthful with friends and family about your abilities and restrictions, and to be vocal about medical situations. I am so grateful to have such incredibly understanding friends behind me.
A danger I face everyday is going into Addison's Crisis. Losing consciousness is a sign, but it can also be triggered by extreme trauma or sickness. I require an emergency injection of hydrocortisone after every episode; without which they would become fatal. I have been hospitalized three times over the past few months because of this- it is incredibly important that those I am with are aware of this.
Through everything, I have found an outlet through dance. Although it is a very physical art form, I have been able to work through pain and exhaustion and attend as many classes as possible and recently competed in Penticton, B.C.
I consider myself very lucky to have such a supportive family. However, the frequent trips to Vancouver, ambulance bills and other medicals needs have been a drain on family resources. I require specialized machinery and medications to keep safe and healthy. So far, we estimate that my total healthcare cost is over $75,000, and will keep growing. Any donation made will be much appreciated!!
It took over four years of being severely ill before I was diagnosed. During this time I was also erroneously diagnosed with Lyme Disease. As a rule, autoimmune diseases are difficult to pinpoint, as they tend to spring up as multiple seemingly unrelated symptoms. I had symptoms including gastric bleeding, migraines, multiple fractures, chronic fatigue, swollen and painful joints, frequent dehydration, and extremely low blood pressure.
I was diagnosed with secondary Addison’s disease, or adrenal insufficiency (a symptom of Polyendocrinopathy), in November 2014, after being bounced from specialist to specialist at the B.C children’s hospital for three years, and enduring blood tests, MRIs, CAT scans and multiple gastroscopies. It was my first trip to the endocrinology department. Everything seemed to finally fit into place, and I immediately began to learn about adrenal insufficiency, and the impact it would take on my life.
Earlier this year, I was referred to Medical Genetics at BCCH. They were able to see the bigger pictures, that other specialists were maybe not able to see. We’ve since then been working together to get a final diagnosis, and explore all the different symptoms and possible complications.
As a teenager, it is sometimes difficult to come to terms with the restrictions that come along with chronic life threatening illness. It is very important to be truthful with friends and family about your abilities and restrictions, and to be vocal about medical situations. I am so grateful to have such incredibly understanding friends behind me.
A danger I face everyday is going into Addison's Crisis. Losing consciousness is a sign, but it can also be triggered by extreme trauma or sickness. I require an emergency injection of hydrocortisone after every episode; without which they would become fatal. I have been hospitalized three times over the past few months because of this- it is incredibly important that those I am with are aware of this.
Through everything, I have found an outlet through dance. Although it is a very physical art form, I have been able to work through pain and exhaustion and attend as many classes as possible and recently competed in Penticton, B.C.
I consider myself very lucky to have such a supportive family. However, the frequent trips to Vancouver, ambulance bills and other medicals needs have been a drain on family resources. I require specialized machinery and medications to keep safe and healthy. So far, we estimate that my total healthcare cost is over $75,000, and will keep growing. Any donation made will be much appreciated!!
Organizer
Larry Lee
Organizer
Kamloops, BC
