Lisa's Fight Against Ehlers-Danlos Syndrome
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My good friend Lisa Kennedy was recently diagnosed with Ehlers-Danlos Syndrome (EDS). EDS is a rare, incurable connective tissue disorder (often times appearing to be an "invisible illness") resulting in faulty collagen throughout the body including organs, skin, joints, blood vessels, etc. Collagen is one of the main building blocks of the body. It is said that a body with EDS is analogous to a brick house built with silly putty instead of mortar. There are many subtypes of EDS. Lisa has the hypermobile type, which means that she can easily hyperextend her joints causing daily partial dislocations of her ribs, hips, ankles, shoulders and wrists. She has chronic pain syndrome, cervical spinal stenosis, degenerative disc disease, and arthritis in her lower lumbar region. Lisa also has symptoms stemming from inappropriate sinus tachycardia (heart rate much higher than expected) including dizziness, lightheadedness, and extreme fatigue.
Lisa was relieved to finally receive a diagnoses after years of experiencing seemingly unrelated symptoms that were a mystery to many of her doctors. However, there is currently no treatment that provides Lisa with enough relief to live life as she did in the past. Most days she is unable to complete tasks that were a previously a part of her daily routine. When she is actually able to function, she suffers severe post-exertional malaise, a spike in symptoms and an energy crash, following levels of activity considered to be normal by others.
For eleven years, Lisa worked as a nanny for a family she loved. In August 2017, she had to leave her job because she was no longer able to provide the high level of care and consistency she knew the family deserved. Because of her health issues and abundance of appointments (specialists, physical therapy, occupational therapy, osteopathic manipulation therapy, and lidocaine infusions) related to those issues, Lisa is unable to work.
If you have known Chris and Lisa for a while, you know that this is not the first time they have faced a significant health challenge together. In 2013, Lisa was diagnosed with ovarian cancer following a hysterectomy to alleviate severe symptoms she was experiencing due to endometriosis and polycystic ovarian syndrome. She endured three grueling rounds of chemotherapy and went into remission on June 4th, 2013. Lisa was unable to work for eight months during her treatment and recovery.
As is the case with many couples, Chris and Lisa relied on both of their incomes to make ends meet. Now they must rely on Chris’s income only, which is sometimes short since he cares for Lisa on her really bad days and also accompanies her at many of her appointments. Most families find it difficult financially to survive one major health crisis, but they are faced with their second in a relatively short period of time. Though they have cut back on their expenses wherever they could, without Lisa’s income their bills are continuing to pile up. Lisa applied for Social Security Disability but was denied and has had to hire an attorney to represent her for a hearing before a judge to determine her disability outcome.
Chris and Lisa are not the type to ask for help—they are usually helping others. When Lisa had cancer, they did not turn to others for financial support. In addition to everything they are facing as a couple with Lisa’s health, on January 5th, 2019, Lisa’s mother Patty was diagnosed with terminal stage 4 colon cancer that has spread to her liver, lungs and lining of her stomach. Patty is currently in palliative chemotherapy to help slow down the growth and give her more time with her family. When she is feeling well enough, Lisa has been spending as much time as she can supporting and helping care for Patty.
Though money cannot relieve Lisa of her medical challenges, hopefully this fundraiser can help ease the financial burden Chris and Lisa are experiencing. Right now they should be spending as much quality, stress-free time as possible with their family.
Thank you for reading Lisa’s story. Please help show Chris and Lisa how much we care about them. They will certainly appreciate any support we are able to provide.
Lisa was relieved to finally receive a diagnoses after years of experiencing seemingly unrelated symptoms that were a mystery to many of her doctors. However, there is currently no treatment that provides Lisa with enough relief to live life as she did in the past. Most days she is unable to complete tasks that were a previously a part of her daily routine. When she is actually able to function, she suffers severe post-exertional malaise, a spike in symptoms and an energy crash, following levels of activity considered to be normal by others.
For eleven years, Lisa worked as a nanny for a family she loved. In August 2017, she had to leave her job because she was no longer able to provide the high level of care and consistency she knew the family deserved. Because of her health issues and abundance of appointments (specialists, physical therapy, occupational therapy, osteopathic manipulation therapy, and lidocaine infusions) related to those issues, Lisa is unable to work.
If you have known Chris and Lisa for a while, you know that this is not the first time they have faced a significant health challenge together. In 2013, Lisa was diagnosed with ovarian cancer following a hysterectomy to alleviate severe symptoms she was experiencing due to endometriosis and polycystic ovarian syndrome. She endured three grueling rounds of chemotherapy and went into remission on June 4th, 2013. Lisa was unable to work for eight months during her treatment and recovery.
As is the case with many couples, Chris and Lisa relied on both of their incomes to make ends meet. Now they must rely on Chris’s income only, which is sometimes short since he cares for Lisa on her really bad days and also accompanies her at many of her appointments. Most families find it difficult financially to survive one major health crisis, but they are faced with their second in a relatively short period of time. Though they have cut back on their expenses wherever they could, without Lisa’s income their bills are continuing to pile up. Lisa applied for Social Security Disability but was denied and has had to hire an attorney to represent her for a hearing before a judge to determine her disability outcome.
Chris and Lisa are not the type to ask for help—they are usually helping others. When Lisa had cancer, they did not turn to others for financial support. In addition to everything they are facing as a couple with Lisa’s health, on January 5th, 2019, Lisa’s mother Patty was diagnosed with terminal stage 4 colon cancer that has spread to her liver, lungs and lining of her stomach. Patty is currently in palliative chemotherapy to help slow down the growth and give her more time with her family. When she is feeling well enough, Lisa has been spending as much time as she can supporting and helping care for Patty.
Though money cannot relieve Lisa of her medical challenges, hopefully this fundraiser can help ease the financial burden Chris and Lisa are experiencing. Right now they should be spending as much quality, stress-free time as possible with their family.
Thank you for reading Lisa’s story. Please help show Chris and Lisa how much we care about them. They will certainly appreciate any support we are able to provide.
Organizer
Karly Frisch
Organizer
Madison, WI