For John, living with Acne Keloidalis Nuchae, Dissecting Cellulitis, and Cutis Verticis Gyrata was only part of the burden. The uncertainty became especially difficult after doctors told him there was “no cure,” leaving him afraid that the changes he was seeing would continue to get worse.
The Words That Took Away Hope
Dr. Sanusi Umar asked John to look back at the condition at its worst and describe what had been hardest to handle, especially after seeing doctors who, in John’s experience, were not giving him the answers he needed.
John’s answer centered on one message he kept hearing: “There’s no cure.” He recalled being told that something might help minimize the condition or bring down swelling, but that there was nothing that could make it go away.
“Any hope that I had was just gone after that.”
When Uncertainty Became the Hardest Part
John explained that the message affected him mentally. Once he believed the condition would never go away, his thoughts moved quickly toward what might happen next. He worried that it would keep getting worse and spread to his face, head, or body.
That fear was tied to changes he could already see. Dr. Umar reflected that John had literally seen his face and head changing, underscoring why the uncertainty could feel so frightening.
More Than the Physical Changes
This chapter stays with the emotional impact of not knowing what would happen next. For John, the hardest part was not simply the physical changes. It was losing hope after being told that nothing could be done to cure the condition.
His account shows how strongly uncertainty shaped this stage of his experience. The next chapter continues the story without getting ahead of what John had yet to learn.
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Medical Disclaimer
This content is for educational purposes only and is not medical advice. Individual experiences and results may vary. Diagnosis and treatment decisions should be made with a qualified medical professional.
Further Reading
- https://dru.com/early-treatment-scalp-bumps/
- Umar S, Lullo JJ, Carter MJ, Shitabata PK, Lee DJ. Acne Keloidalis Nuchae is Associated with Cutis Verticis Gyrata. Clin Cosmet Investig Dermatol. 2022 Jul 26;15:1421-1427. doi: 10.2147/CCID.S369243. Erratum in: Clin Cosmet Investig Dermatol. 2022 Aug 18;15:1673-1674. doi: 10.2147/CCID.S385560. PMID: 35924256; PMCID: PMC9342927.
https://www.dovepress.com/acne-keloidalis-nuchae-is-associated-with-cutis-verticis-gyrata-peer-reviewed-fulltext-article-CCID
