Doc says I need Mayo Clinic. Please help
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This is a letter from my mother that I asked her to write for this website. I thought it would be best coming from someone other than me.
- Beth Clarkson
My doctors want me to go because I need multiple specialties to collaborate and look at everything together instead of bouncing me around from specialty to specialty. He (the first to bring it up) said what's best for me as a patient is to go somewhere where all the specialties I need will look me up head to toe, find things, and collaborate. The only place that does that and does it well is Mayo Clinic. That's WHY Mayo.
I've lived with many questions and very seemingly random symptoms daily for years and it would be nice to have an answer but -- most of all -- whatever "it" is can't be treated until it's diagnosed.
He said anywhere else and I won't find an answer.
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I will start by telling you that Beth is my only child. She was born 3 almost 4 months premature. She remained in the hospital for the first 8 weeks of her life. When I brought her home from the hospital the doctors told me she would be fine just like any other baby only a bit smaller. For the first 10 years the most consistent problem she had was asthma aside from normal childhood illnesses. Right before Beth developed into a teenager she began experiencing back pain that became chronic due to various injuries. The doctors diagnosed Beth with Fibromyalgia Syndrome. Beth's current doctors believe that chronic pain was brought on by Ehlers-Danlos Syndrome.
Over the past 3 years or so Beth's health has been declining and her pain has become severe. Although it has not been officially diagnosed, she has been told by several doctors that she has Ehlers-Danlos Syndrome, which is a rare connective tissue disorder causing the ligaments to over stretch but not contract back to their original shape and size. Because of this, she must wear ankle braces all the time and often knee brace and occasionally wrist braces and a, rarely, a sling for her shoulder.Her jaw is permanently dislocated due to the ligament being too loose there. She has also been forced to use a cane to help her get around at times she is even forced to use a wheel chair on the exceptionally bad days.
In the last 3 to 4 months she has been finding multiple bruises all over her body even though she has seen a hematologist no one was able to determine what was the cause of the bruising. As if that were not enough in the last 3 to 4 weeks she has developed lumps in all the areas where she has lymph nodes. No infection has been found the lumps continue to multiply.
Several of her doctors have told her she needs to go to Mayo Clinic soon to find a diagnosis. With out a propper diagnosis Beth may never be able to treated correctly and, therefore, her quality of life will not get better.
As Beth is my child it hurts me everyday that there is nothing I can do to take away the pain she lives with everyday. Her pain is chronic and is difficult to control. She spends most days in more pain than most people will ever experience.
Beth is only 23 years she has her whole life ahead of her. She badly wants to go to school to become a doctor. With out a proper diagnosis Beth will not be able to fulfill her dream. As Beth is unable to work and her mother is on disability and her father is out of the picture we are reaching out and requesting donations to get Beth to Mayo Clinic. She will need air fair, accommodations, transportation and money for food and copays while she is there. Any assistance you can provide will be greatly appreciated.
Thank you for you assistance it is greatly appreciated.
Sincerely,
Sharon Kerr
- Beth Clarkson
My doctors want me to go because I need multiple specialties to collaborate and look at everything together instead of bouncing me around from specialty to specialty. He (the first to bring it up) said what's best for me as a patient is to go somewhere where all the specialties I need will look me up head to toe, find things, and collaborate. The only place that does that and does it well is Mayo Clinic. That's WHY Mayo.
I've lived with many questions and very seemingly random symptoms daily for years and it would be nice to have an answer but -- most of all -- whatever "it" is can't be treated until it's diagnosed.
He said anywhere else and I won't find an answer.
-----------
I will start by telling you that Beth is my only child. She was born 3 almost 4 months premature. She remained in the hospital for the first 8 weeks of her life. When I brought her home from the hospital the doctors told me she would be fine just like any other baby only a bit smaller. For the first 10 years the most consistent problem she had was asthma aside from normal childhood illnesses. Right before Beth developed into a teenager she began experiencing back pain that became chronic due to various injuries. The doctors diagnosed Beth with Fibromyalgia Syndrome. Beth's current doctors believe that chronic pain was brought on by Ehlers-Danlos Syndrome.
Over the past 3 years or so Beth's health has been declining and her pain has become severe. Although it has not been officially diagnosed, she has been told by several doctors that she has Ehlers-Danlos Syndrome, which is a rare connective tissue disorder causing the ligaments to over stretch but not contract back to their original shape and size. Because of this, she must wear ankle braces all the time and often knee brace and occasionally wrist braces and a, rarely, a sling for her shoulder.Her jaw is permanently dislocated due to the ligament being too loose there. She has also been forced to use a cane to help her get around at times she is even forced to use a wheel chair on the exceptionally bad days.
In the last 3 to 4 months she has been finding multiple bruises all over her body even though she has seen a hematologist no one was able to determine what was the cause of the bruising. As if that were not enough in the last 3 to 4 weeks she has developed lumps in all the areas where she has lymph nodes. No infection has been found the lumps continue to multiply.
Several of her doctors have told her she needs to go to Mayo Clinic soon to find a diagnosis. With out a propper diagnosis Beth may never be able to treated correctly and, therefore, her quality of life will not get better.
As Beth is my child it hurts me everyday that there is nothing I can do to take away the pain she lives with everyday. Her pain is chronic and is difficult to control. She spends most days in more pain than most people will ever experience.
Beth is only 23 years she has her whole life ahead of her. She badly wants to go to school to become a doctor. With out a proper diagnosis Beth will not be able to fulfill her dream. As Beth is unable to work and her mother is on disability and her father is out of the picture we are reaching out and requesting donations to get Beth to Mayo Clinic. She will need air fair, accommodations, transportation and money for food and copays while she is there. Any assistance you can provide will be greatly appreciated.
Thank you for you assistance it is greatly appreciated.
Sincerely,
Sharon Kerr
Organizer
Opal Clarkson
Organizer
