Help Janet's Serious and Rare Immunity Reaction

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 three and a half 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 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 2024, 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 disability 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. Henry Kanarek, Allergist and Immunologist specializing in Hereditary Angioedema of Overland Park, Kansas

Dr. Bruce Zuraw of the Hereditary Angioedema Center at U of C San Diagon ,and Dr. Scott Lucchese of the University of Arkansas Medical School of Neurology.

Janet's quality of life has greatly diminished. She spends her days bedbound due to severe muscle weakness, acute inflammation, and chronic fatigue

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 hour long 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.

This is the case for thousands of rare disease and chronic illness sufferers. It can take years of doctor's research, lab testing and consulting with multiple specialists before being able to identify the one disease out of thousands.

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.

Again, there is no cure for any of Janet's autoimmune disorders, rare diseases, and CIDP. She 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, and medications), the need for a new roof for their home, and the hundreds of other daily expenses and medical expenses.

Janet and Sterling have faced this medical crisis with dark humor, lots of therapy, and the never-ending hope one day a treatment will be able to give Janet back at least a small piece of the life she knew before her adverse event.

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 their 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.

For 2025, Janet will have an upcoming operation, and continued testing with consults from specialists.