Help Jill Edens transition home!— a CIDP battle

My name is Amy Bjorn, and I am raising funds to help support my mother - Jill Edens - return home from the hospital after a major regression in her debilitating disease called Chronic Inflammatory Demyelinating Polyneuropathy. CIDP is a rare autoimmune disease with similar characteristics to Guillian Barre syndrome, only that her symptoms are not temporary and continue to progress in a roller coaster of remission and regression. In CIDP, the myelin sheath that surrounds the nerve bundles in the body are attacked by the immune system- the depletion of this protective covering causes nerves to not conduct properly, resulting in the attached muscles either not working correctly or not working at all, often accommodated by a reduced sensation and/or severe pain.

My mother is 66 years old and was diagnosed in 2015 after a lengthy hospital stay and took several months to recover in rehab. CIDP can be helped in a number of ways, and over the years Jill has been treated successfully with prednisone and periodic rounds of plasma exchange. These therapies have been less fruitful in recent months, and my mom has been hospitalized 4 times in 2023 at University of Washington- the only CIDP specialists in the northwest. Jill has been especially affected in her leg muscles, and lacks the ability to stand, walk, or even adjust her legs for comfort (although can flex her feet). She has reduced function in both arms, and especially her right arm, requiring support with her eating and other basic needs, and even stealing away her ability to enjoy one of her favorite activities: crocheting beautiful gifts for family, friends, and the homeless community.

Jill is still undergoing plasma exchange and chemotherapy to try to prevent further nerve damage, and hopefully restore some function in her body. She is working with physical and occupational therapy, her current goal to be discharged to rehabilitation once she is done with PLEX— although a skilled nursing facility has not been ruled out. While my mom continues to fight to get better, her family is attempting to make adjustments to her home, and to provide tools that would make returning home not only a possibility, but a reality.

In another layer of difficulty and complication, my father is currently battling bone marrow cancer and undergoing chemotherapy. He is a patient at Fred Hutch and is also a candidate for bone marrow transplant, a process which they hope to start later this year. My dad has been an absolute rock to my mom, by her side and advocating for her nearly every day while dodging his own many doctors appointments and diagnosis, and his own fatigue from chemo. I know that his heart’s desire is to see my mother recover before taking on his bone marrow transplant - which will require 4 months living at Fred Hutch and about a year of commitment and recovery for him. Both he, and my mother, may need temporary care providers as we try to piece that major puzzle together… but that is for sorting out on another day.

While the future is not without hope, it is unpredictable and very daunting. The one thing we CAN control is to provide a means to quality of life, even on the worst of days. We are currently working to install a wheelchair ramp, purchase an electronic hoyer lift, a foldable power wheelchair (Medicare rejected), power lift, and other tools and modifications to the Edens home that make living with disability more manageable and comfortable. My father has been putting hundreds of miles per week on his car (gas $$) as he travels from Enumclaw to Seattle every day to be with my mother and attend his own doctors appointments.

My parents are so grateful for the encouragement and prayers they have received, and they will continue to lean and depend on this love as they navigate what is ahead. It would be an amazing gift to lift their burdens in a tangible way, and I sincerely appreciate your consideration and donations towards helping my mom (and inherently, my dad) achieve a more quality life.