A typical day in the life of a sixteen year old girl most likely revolves around a mixture of sports, friends, school, job, clothes, makeup and maybe a boyfriend. Emma Widmar is not a typical sixteen year old girl. For the past four years her days have started with a swollen face, lips and sometimes difficult breathing. The swelling varies in severity with Emma having no control over when or how badly the attacks will occur. Other components to these illness are related to mobility, movement and fainting. Some days Emma can't get out of bed, other days walking isn't an option and she is forced to crawl around her house. Days can spiral out of control leaving her to constantly need a companion because of the fear of her losing consciousness and becoming unresponsive. Her body betrays her and is robbing her of a "normal" teenage life. Emma's body reacts to all sorts of "triggers" which are not all known at this time so she struggles being out among people in public environments for fear of encountering a scent or fragrance that can send her into an attack. Even the wrong laundry detergent or hand soap can make her critically ill. This young woman has gone from being a high level athlete, involved high school student to someone who is living from one doctor's appointment to the next.
Emma has been diagnosed with Postural Orthostatic Tachycardia Syndrome, otherwise known as POTS, and Mastocytosis. POTS is a form of Orthostatic Intolerance and the failure of the autonomic system. The autonomic system controls all of your involuntary functions like blood pressure, heart rate, blood to organs. Mastocytosis is the abnormal growth of mast cells in a body. These cells are cells that produce histamine and control allergic responses. Mast cells are produced all over the human body, but extras seem to be in the GI tract of Emma’s body and her facial areas.
In the past 6 months of her life, Emma has experienced 15 Emergency Room visits with nearly every visit needing 1 or more doses of Epinephrine (Epi pen). Emma has been hospitalized at Wheaton Franciscan in Racine, Children’s Hospital of Wisconsin in Milwaukee, and St. Mary’s Hospital at Mayo Clinic in Rochester, Minnesota. While at Mayo Clinic she was observed in the ICU. Emma has seen over 25 different doctors in the past four years of her life, she continues to see her allergist on a weekly basis.
Emma’s mother is on Family Medical Leave and her father is not working due to an injury. Emma is rarely able to attend school and has had to adapt to online schooling and had to shorten her class schedule. Emma is not allowed to ever be alone anywhere or to drive a car because of her frequent fainting spells. Both of Emma’s chronic illnesses combat one another and treatment options for patients with just POTS or just Mastocytosis would be a lot simpler. Her situation is very complex and confusing to many doctors. With strength and determination she has hope for the future for those with the same diagnosis.
At this time the doctors are working out a treatment strategy for Emma but because her case is so complex the process is slow. She will need to make many more trips back to Mayo Clinic in Rochester, MN in the immediate future. If no effective treatment plan is developed at Mayo Clinic, her family will proceed to the University of San Diego for medical help.
Throughout all of this, Emma has created a blog as a way of therapy and is selling bracelets in honor of her fight against POTS and Mastocytosis. She prays for education of her condition so that some day someone else will benefit. Her illnesses have altered her life tremendously. Many refer to her as Chronically Ill, but she refers to herself, those who are chronically ill, and those who support her as CHRONICALLY AWESOME.
In an effort to help offset the high cost of Emma’s medical journey, I am asking you to consider donating to the Widmar family. In addition to love and support this family needs your financial help. By donating, you will help allow Emma to continue to see doctors and be apart of research, but more importantly the research done on her will help future patients tremendously who deal with POTS and Mastocytosis, two rare illnesses. Your support is greatly appreciated financially and emotionally. If you are unable to give, please pray for Emma and her family. Now, let's make the world aware of POTS and Mastocytosis. Be #CHRONICALLYAWESOME
Check out her blog: www.thesaltshakersite.wordpress.com
Emma has been diagnosed with Postural Orthostatic Tachycardia Syndrome, otherwise known as POTS, and Mastocytosis. POTS is a form of Orthostatic Intolerance and the failure of the autonomic system. The autonomic system controls all of your involuntary functions like blood pressure, heart rate, blood to organs. Mastocytosis is the abnormal growth of mast cells in a body. These cells are cells that produce histamine and control allergic responses. Mast cells are produced all over the human body, but extras seem to be in the GI tract of Emma’s body and her facial areas.
In the past 6 months of her life, Emma has experienced 15 Emergency Room visits with nearly every visit needing 1 or more doses of Epinephrine (Epi pen). Emma has been hospitalized at Wheaton Franciscan in Racine, Children’s Hospital of Wisconsin in Milwaukee, and St. Mary’s Hospital at Mayo Clinic in Rochester, Minnesota. While at Mayo Clinic she was observed in the ICU. Emma has seen over 25 different doctors in the past four years of her life, she continues to see her allergist on a weekly basis.
Emma’s mother is on Family Medical Leave and her father is not working due to an injury. Emma is rarely able to attend school and has had to adapt to online schooling and had to shorten her class schedule. Emma is not allowed to ever be alone anywhere or to drive a car because of her frequent fainting spells. Both of Emma’s chronic illnesses combat one another and treatment options for patients with just POTS or just Mastocytosis would be a lot simpler. Her situation is very complex and confusing to many doctors. With strength and determination she has hope for the future for those with the same diagnosis.
At this time the doctors are working out a treatment strategy for Emma but because her case is so complex the process is slow. She will need to make many more trips back to Mayo Clinic in Rochester, MN in the immediate future. If no effective treatment plan is developed at Mayo Clinic, her family will proceed to the University of San Diego for medical help.
Throughout all of this, Emma has created a blog as a way of therapy and is selling bracelets in honor of her fight against POTS and Mastocytosis. She prays for education of her condition so that some day someone else will benefit. Her illnesses have altered her life tremendously. Many refer to her as Chronically Ill, but she refers to herself, those who are chronically ill, and those who support her as CHRONICALLY AWESOME.
In an effort to help offset the high cost of Emma’s medical journey, I am asking you to consider donating to the Widmar family. In addition to love and support this family needs your financial help. By donating, you will help allow Emma to continue to see doctors and be apart of research, but more importantly the research done on her will help future patients tremendously who deal with POTS and Mastocytosis, two rare illnesses. Your support is greatly appreciated financially and emotionally. If you are unable to give, please pray for Emma and her family. Now, let's make the world aware of POTS and Mastocytosis. Be #CHRONICALLYAWESOME
Check out her blog: www.thesaltshakersite.wordpress.com
Organizer and beneficiary
Ann Widmar
Beneficiary