Help Karen defeat Susac Syndrome
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Tracy Pheneger and Susan Koenig are organizing this fundraiser on behalf of Karen Gebhart and her family
Karen and her family are in immediate need of funds to pay for ongoing medical expenses and treatment vital to Karens’s survival and hopeful remission from Susac Syndrome. Karen's treatments will help in putting a stop to the continuous micro-strokes occurring in her brain due to this disease. Without treatment, the damage can cause complete or partial loss of vision, hearing loss, cognitive decline, loss of memory, strength, and balance, and overall life-threatening damage to her brain.
Karen’s Story:
In December 2021, Karen started to experience symptoms that were initially diagnosed by her PCP as hypothyroidism. When the symptoms did not improve but worsened she was admitted to Littleton hospital, who diagnosed her with a stroke. After a few days of hospitalization they sent her home to follow up with her PCP. When reaching the necessary caregivers became difficult and her symptoms worsened again, her husband Chris made the decision to take her to the #1 Brain center in Colorado, Swedish Hospital. There within 24 hours she was diagnosed with a very rare and terrifying auto-immune condition called Susac Syndrome. She was once again hospitalized after an MRI revealed the numbness she begun to experience was the result of several micro-strokes in her brain. After undergoing more MRIs, a lumbar puncture, and countless lab and blood tests, Karen is still in the hospital and has a long battle ahead.
After her diagnosis, Karen began an expensive course of treatment and will be moved to another hospital that specializes in her condition, once a bed becomes available. Currently, the doctors are treating her with drugs and IVIG that will hopefully stop the progression of the micro-strokes and save her eyesight and hearing.
There is hope; in many cases, Susac Syndrome can go into remission if managed with treatments. The goal is that, with proper treatment, the doctors can stop the micro-strokes long enough to reach remission. The damage caused by the strokes is permanent, so time is absolutely critical in ensuring that Karen is able to be on the right medications and start physical and speech therapy immediately.
What Your Donation Provides:
As of right now, Karen needs costly IVIG treatment and possibly Rituxan. Both of which are considered "experimental" because her disease is so rare (only 500 cases in all of medical literature) there is no "standard" course of care. Karen will also need extensive physical and speech therapy to restore her to a functioning member of her dear family.
We Need Your Help:
In order to get her family through this and for Karen to have a chance at a life with her beautiful family, we are asking for your support in raising money to help cover her medical expenses and to ensure she can receive this desperately needed medication and therapy. We ask you humbly and thank you for taking the time to read, donate, and share.
You can find more details on this rare autoimmune disease at the National Organization for Rare Disorders website.
Karen and her family are in immediate need of funds to pay for ongoing medical expenses and treatment vital to Karens’s survival and hopeful remission from Susac Syndrome. Karen's treatments will help in putting a stop to the continuous micro-strokes occurring in her brain due to this disease. Without treatment, the damage can cause complete or partial loss of vision, hearing loss, cognitive decline, loss of memory, strength, and balance, and overall life-threatening damage to her brain.
Karen’s Story:
In December 2021, Karen started to experience symptoms that were initially diagnosed by her PCP as hypothyroidism. When the symptoms did not improve but worsened she was admitted to Littleton hospital, who diagnosed her with a stroke. After a few days of hospitalization they sent her home to follow up with her PCP. When reaching the necessary caregivers became difficult and her symptoms worsened again, her husband Chris made the decision to take her to the #1 Brain center in Colorado, Swedish Hospital. There within 24 hours she was diagnosed with a very rare and terrifying auto-immune condition called Susac Syndrome. She was once again hospitalized after an MRI revealed the numbness she begun to experience was the result of several micro-strokes in her brain. After undergoing more MRIs, a lumbar puncture, and countless lab and blood tests, Karen is still in the hospital and has a long battle ahead.
After her diagnosis, Karen began an expensive course of treatment and will be moved to another hospital that specializes in her condition, once a bed becomes available. Currently, the doctors are treating her with drugs and IVIG that will hopefully stop the progression of the micro-strokes and save her eyesight and hearing.
There is hope; in many cases, Susac Syndrome can go into remission if managed with treatments. The goal is that, with proper treatment, the doctors can stop the micro-strokes long enough to reach remission. The damage caused by the strokes is permanent, so time is absolutely critical in ensuring that Karen is able to be on the right medications and start physical and speech therapy immediately.
What Your Donation Provides:
As of right now, Karen needs costly IVIG treatment and possibly Rituxan. Both of which are considered "experimental" because her disease is so rare (only 500 cases in all of medical literature) there is no "standard" course of care. Karen will also need extensive physical and speech therapy to restore her to a functioning member of her dear family.
We Need Your Help:
In order to get her family through this and for Karen to have a chance at a life with her beautiful family, we are asking for your support in raising money to help cover her medical expenses and to ensure she can receive this desperately needed medication and therapy. We ask you humbly and thank you for taking the time to read, donate, and share.
You can find more details on this rare autoimmune disease at the National Organization for Rare Disorders website.
Fundraising team (3)
Tracy Pheneger
Organizer
Longmont, CO
Chris Gebhart
Beneficiary
Susan Crediford Koenig
Team member