Send Rebecca to the Mayo Clinic!
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Dear friends and family, I am so overjoyed to share that I have been accepted as a patient at the Mayo Clinic, and will be traveling to the clinic for 2 weeks of testing and treatment this September! To make that possible, our family needs help with travel and medical expenses. Please help!
I know that I usually keep my health problems to myself, and that you may not even know that I have a disability. My disability is invisible, but I have been struggling with chronic, debilitating pain for the past 15 years, since my freshman year of college. I have been misdiagnosed over and over again, and have seen countless doctors who have not been able to figure out what is going wrong with my body. I have spent years struggling with severe pain which has prevented me, in many ways, from havings a normal life: I have never been able to hold down a full-time job or help pay back my student loans. It was a tremendous struggle just to graduate with my undergraduate degree, and I have been unable to pursue my dream of going to graduate school or getting my Ph. D. I have three beautiful children, but I can't always be the mom that I want to be to them. If not for the support of my amazing husband, who has always been there for me through everything, I don't know what I would have done! I am so thankful that after struggling to find answers for over 15 years, we finally are beginning to get an accurate diagnosis, and that there is hope for a treatment!
What we now think (and hope to confirm conclusively at the Mayo Clinic) is that when I was 17 years old, I contracted the Epstein-Barr virus, also known as Mononucleosis. Whereas most teenagers recover after a couple of weeks of flu-like symptoms, I did not. Instead, I developed a series of autoimmune disorders and endocrine disorders that have severely damaged my nervous system and caused neurological pain throughout my whole body. We do know conclusively that I have extensive nerve damage. The pain and damage is in almost every part of my body, including my hands, arms, legs, feet, spine, back, even my neck and face. There have been times when I was in so much pain I could not use a pencil, walk to class, carry my books, turn my head, or even get out of bed. This neurological damage has extended to my autonomic nervous system, which regulates most basic bodily functions, such as heart-rate, blood pressure, digestion, and sleep. About three years ago, when I was pregnant with my daughter Lucy, I began to experience bouts of tachycardia. My heart rate seemed to be around 100 beats per minute all the time and would go up to 140 after a shower or a meal. But after a full work up with a cardiologist, we could find nothing wrong: my heart is perfectly normal and healthy. We thought the tachycardia might go away with time after the baby was born, but it didn't. It actually got worse.
My heart rate is now 130-140 beats per minute most of the time. I have a condition called Postural Orthostatic Tachycardia Syndrome, or POTS. When a normal person stands up, gravity pulls blood down to their legs, but then that person's autonomic nervous system kicks in by raising their blood pressure, sending the blood back up to the head so they don't pass out. When someone with a malfunctioning autonomic system stands up, that response doesn't happen, so they either pass out, or their heart tries to compensate by beating faster. A person with POTS has tachycardia whenever they are upright. I now have a resting heart rate of 130-140 beats per minute. It feels like I am running a marathon all the time!
I am very grateful to be in the hands of some really excellent doctors who are helping me with my neurological pain, and on most days, I am pain free! This in and of itself is a miracle, and more than I ever hoped for. But whatever has been causing this persistent, progressive nerve damage is NOT under control, and we must figure out the exact combination of autoimmune disorders and other conditions that are contributing to my worsening POTS. And I can't get worse - I'm a full time mom! I have three kids who need me, I can't be confined to bed all day, I have to be there for them. And I would really like to be able to run again, work, and go to grad school too.
I am so glad that I have the opportunity to go to the Mayo Clinic, and if you would help me get there, I would be so incredibly grateful! If you could support me with a donation, sharing my page, or even just your thoughts and prayers, I would deeply appreciate it and be forever grateful to you.
Yours,
Rebecca Hatcher
I know that I usually keep my health problems to myself, and that you may not even know that I have a disability. My disability is invisible, but I have been struggling with chronic, debilitating pain for the past 15 years, since my freshman year of college. I have been misdiagnosed over and over again, and have seen countless doctors who have not been able to figure out what is going wrong with my body. I have spent years struggling with severe pain which has prevented me, in many ways, from havings a normal life: I have never been able to hold down a full-time job or help pay back my student loans. It was a tremendous struggle just to graduate with my undergraduate degree, and I have been unable to pursue my dream of going to graduate school or getting my Ph. D. I have three beautiful children, but I can't always be the mom that I want to be to them. If not for the support of my amazing husband, who has always been there for me through everything, I don't know what I would have done! I am so thankful that after struggling to find answers for over 15 years, we finally are beginning to get an accurate diagnosis, and that there is hope for a treatment!
What we now think (and hope to confirm conclusively at the Mayo Clinic) is that when I was 17 years old, I contracted the Epstein-Barr virus, also known as Mononucleosis. Whereas most teenagers recover after a couple of weeks of flu-like symptoms, I did not. Instead, I developed a series of autoimmune disorders and endocrine disorders that have severely damaged my nervous system and caused neurological pain throughout my whole body. We do know conclusively that I have extensive nerve damage. The pain and damage is in almost every part of my body, including my hands, arms, legs, feet, spine, back, even my neck and face. There have been times when I was in so much pain I could not use a pencil, walk to class, carry my books, turn my head, or even get out of bed. This neurological damage has extended to my autonomic nervous system, which regulates most basic bodily functions, such as heart-rate, blood pressure, digestion, and sleep. About three years ago, when I was pregnant with my daughter Lucy, I began to experience bouts of tachycardia. My heart rate seemed to be around 100 beats per minute all the time and would go up to 140 after a shower or a meal. But after a full work up with a cardiologist, we could find nothing wrong: my heart is perfectly normal and healthy. We thought the tachycardia might go away with time after the baby was born, but it didn't. It actually got worse.
My heart rate is now 130-140 beats per minute most of the time. I have a condition called Postural Orthostatic Tachycardia Syndrome, or POTS. When a normal person stands up, gravity pulls blood down to their legs, but then that person's autonomic nervous system kicks in by raising their blood pressure, sending the blood back up to the head so they don't pass out. When someone with a malfunctioning autonomic system stands up, that response doesn't happen, so they either pass out, or their heart tries to compensate by beating faster. A person with POTS has tachycardia whenever they are upright. I now have a resting heart rate of 130-140 beats per minute. It feels like I am running a marathon all the time!
I am very grateful to be in the hands of some really excellent doctors who are helping me with my neurological pain, and on most days, I am pain free! This in and of itself is a miracle, and more than I ever hoped for. But whatever has been causing this persistent, progressive nerve damage is NOT under control, and we must figure out the exact combination of autoimmune disorders and other conditions that are contributing to my worsening POTS. And I can't get worse - I'm a full time mom! I have three kids who need me, I can't be confined to bed all day, I have to be there for them. And I would really like to be able to run again, work, and go to grad school too.
I am so glad that I have the opportunity to go to the Mayo Clinic, and if you would help me get there, I would be so incredibly grateful! If you could support me with a donation, sharing my page, or even just your thoughts and prayers, I would deeply appreciate it and be forever grateful to you.
Yours,
Rebecca Hatcher
Organizer
Rebecca N. Hatcher
Organizer
Fountain Valley, CA