Skin Disorder Journey Article

I need an article about a patient’s journey from the onset of a rare dermatological disorder to it’s correct diagnosis. Rare skin disorders are difficult to diagnose.

The audience for the article are patients with a similar conditions and their dermatologists. It should be informative in tone but not something that would be published in a medical journal.

Key points to cover include:

- Challenges faced during the diagnostic process
- Overview of treatment options and the patient's chosen path
- Reflections on living with the condition
- Description of the rare skin disorder from the patient pespective.
- Patient's initial signs and his reaction, e.g., growing anxiety
- Limit use of technical/medical language. Use lay language as much as possible.
- Patient's initial signs (what patient/family can see) and experiences (espcially growing anxiety)
- Challenges faced during the diagnostic process. The term “Diagnostic Odyssey” is used by patients, patient advocates and dermatologists.
- Overview of treatments undertaken for the wrong diagnosis. Their is growing dispair and anxiety
- Reflections on living with a rare dermatologcal condition that has no known cause, no cure, and no FDA-approved treatment.

Ideal skills and experience:
- Strong medical writing background
- Ability to convey complex medical information clearly
- Experience writing for a patient audience
- Empathy and sensitivity in handling personal health narratives
- The interjection of humor is OK

Four parts to the RareDERM story

- Patient information and onset of the disorder: 500 words
- First exam by dermatologist and a misdiagnosis: 500 words
- The diagnositic odyssey: 500 words
- The definitive diagnosis: 500 words