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Help Janet's Serious and Rare Immunity Reaction
0% complete
$16,014 raised of $25K
165 donations
You can follow Janet's journey on TikTok @justajanet https://tiktok.com/@justajanet
On March 23rd, 2021, Janet suffered a severe anaphylactic reaction resulting in a week stay in the ICU. However, after she was sent home instead of getting better, she grew worse. Multiple hospitizations followed yet, week after week, Janet's health continued to seriously decline.
After four years of extensive lab testing, DNA and HLA testing, specialist consults from oncology, hematology, neurology, genetics, internal medicine, and allergy-immunology with involvement from the NIH, the following conclusions have been made: Janet suffered an immediate anaphylactic response to a medication which instantly initiated Mast Cell Activation Syndrome, CARPA, and the medical trauma of this event awakened a rare, dormant genetic disease, Hereditary Angioedema C1 Normal. A neurological disorder also became active causing Janet's nerves and muscles to no longer properly function.
In late May of 2021, renowned allergist and immunologist Dr. Tina Merritt took over Janet's case and continues to guide Janet's extensive care.
Janet's incurable chronic illnesses will require lifelong maintenance utilizing millions of dollars of specialty medications including monthly five day treatments of high dose I.V. infusions of immunoglobulin therapy to help ease the symptoms of her neurological disorder.
Unfortunately, disability through social security is not an option for Janet since the government does not recognize stay at home mothers as a necessary work force. The rules for SSDI is if you do not work for 10 years thus not paying into Social Security you are immediately deemed invalid to receive SSDI. A smaller disability program is offered called SSI yet Janet's husband's income makes it impossible for her to claim this benefit. Therefore, Janet is unable to receive any disability benefits to aid her. This has left the sole financial responsibility for their family's financial well-being and Janet's medical care upon her husband.
Janet remains under the care of:
Dr. Cheryl Fulton of Mercy, Lowell, Arkansas
Dr. Tina Merritt, Allergist and Immunologist of Bentonville, Arkansas
Dr. Bruce Zuraw of the Hereditary Angioedema Center at U of C San Diago, and Dr. Scott Lucchese of the University of Arkansas Medical School of Neurology.
Janet's quality of life has greatly diminished. The CIDP causes severe muscle weakness, acute inflammation, and chronic fatigue.
In December, 2024, Janet was placed in the ICU for a week due to severe stress triggering all of health disorders into one massive flare.
In 2024, Dr. Scott Lucchese was brought in to consult on Janet's neurological issues by Dr. Tina Merritt. Dr. Lucchese is one of the most respected neurologists at UAMS and is an associate professor.
After his consult with Janet and Dr. Merritt, Dr. Lucchese immediately recognized all of Janet's symptoms as being a rare neurological disorder known as CIDP.
"Chronic inflammatory demyelinating polyneuropathy is a rare neurological disorder where the body's immune system attacks the myelin sheath protecting nerves, causing progressive weakness, numbness, and impaired sensory function in the arms and legs; while not typically fatal, it can be quite serious if left untreated, potentially leading to significant disability and dependence on a wheelchair due to its impact on mobility."
Unfortunately for Janet, her CIDP was undiagnosed for three and a half years. She is significantly disabled and does have to rely on a wheelchair for mobility requiring more than a few steps.
Thanks to New Harmony Baptist Church in Bartlesville, Oklahoma, their love offering covered 75% of the cost for Janet's electric wheelchair.
Dr. Lucchese and Dr. Merritt has created a treatment plan for Janet's CIDP. While it will not be able to cure her the hope is the monthly infusions or the five day high doses of IVIG will provide Janet relief from her most severe CIDP symptoms.
Janet will spend the remainder of her life dependent on millions of dollars of specialty medications, yearly, just to maintain her illnesses.
All donations collected will go directly to Janet and Sterling to use in manner they see fit. With the rising cost of living (groceries, utilities, insurance, insurance co-pays, travel expenses to UAMS, and medications, you're donates always save the day!
Janet and Sterling have faced this medical crisis with dark humor, lots of therapy, and the never-ending hope.
Janet remains an ardent supporter of medical science, vaccines, and the belief good doctors still exists and she has been beyond lucky to have Dr. Merritt lead her medical team by bringing in a highly respected specialists to crack Janet's "medical mystery."
Janet and Sterling want to thank everyone who has donated and shared Janet's GoFundMe. Your donations have provided invaluable support to their family, and they cannot thank you enough for your kindness.
Please continue to share the link to Janet's GoFundMe to your social media.
Upcoming for Janet is a much needed trip to UAMS in Little Rock for 3 days of testing and recovery before she can safely travel home. Funds are needed for travel, a hotel for 3-4 nights, and any other miscellaneous costs.
Organizer and beneficiary
Janet Schroeder
Beneficiary
