She wanted to warn her PRP family!
Jandina Gelormino joined the Facebook-based PRP Support Group in December 2016 when she was diagnosed with pityriasis rubra pilaris (PRP). She was an active member who authored posts and offered comments. She also donated her time to reach to fellow sufferers.
Over the next seven-plus years the signs and symptoms of PRP continued unabated. Like many”kindred spirits”, treatment options that worked for others never seemed to work for her.
In May 2024 When doctors ran tests unrelated to PRP, they determined Jandina did not have PRP. Instead, she was given a revised diagnosed of T-Cell Lymphoma and a disheartening prognosis.
For nearly eight years Jandina had been treated for the wrong disease. Even more disconcerting, the newly diagnosed T-Cell Lymphoma required immediate and intensive chemotherapy that was both painful and ineffective.
In July 2024 Jandina wanted to show her support the publication of the 60-Second PRP Roadmap — Peer Review Workbook. We both fell victim to a publishing scam. While I was able to repay $7,850 of her $8.250 “bridge loan”, I was unable to repay the last $400 before her death.
On December 18, in response to my In Memoriam to Jandina, Virginia :Ginny” Maxwell made a $100 donation to be a[plied to the repayment of the remaining debt.
That got me thinking.
During conversations with Jandina between July to September, she reiterated her hope that “every PRP patient who has not achieved remission within four years of onset should be specifically tested for T-Cell Lymphoma.”
Together we can make Jandina’s Wish a reality.
- IDENTIFY patients initially diagnosed with PRP who were subsequently diagnosed T-Cell Lymphoma, Sezary syndrome and other cancer-related diseases to incudeL Page P. (02/2014), Renee V. (11/2017), Violet T. (12/2017), Nick C. (03/2021), Zack T (08/2022), Jessica S, (09/2023) and Annette H, (11/2023).
- ADVOCATE for blood tests and biopsies to specifically exclude T-Cell Lymphoma, Sezary syndrome and the presence of cancer cells when treatment options have not achieved success three years after onset.
- PARTNER with the Cutaneous Lymphoma Foundation, a 501(c)(3) non-profit patient advocacy organization, For over 25 years CLT has been dedicated to supporting every person affected by cutaneous lymphoma.
- RESEARCH number of patients diagnosed with T-Cell Lymphoma, Sexary syndrome and other cancer-related diseases to determine percentage misdiagnosed with PRP.
- MOBILIZE members of the Facebook PRP Support Group who have responded to the sad news of Jandina Gelormino’s death with a comment and/or reaction (Care, Sad or Love).
- OUTREACH to the following stakeholders for support
(1) National Organization of Rare Disorders
(2) International Alliance of Dermatology Patient Organizations (GlobalSkin)
(3) Everylife Foundation
(4) American Academy of Dermatology Association
(5) American Society of Dermatopathology - COMMUNICATE findings to stakeholders
(1) Take advantage of Rare Disee Day (February 28, 2024)
Help me raise the last $300 to pay Jandina’s Estate to retire the remaining balance of the $8,225 she loaned the PRP Alliance in July.
Jandina Gelormino, long-time resident of Eugene, Oregon, and business owner, passed from this earth on October 19th, 2024.