Malignant Atrophic Papulosis Is Challenging to Diagnose, Treat

The burden of this disease requires an integrated, multidisciplinary team. Without communications with other healthcare providers, we may never have learned of the patient who was successfully treated with eculizumab and our patient may not have survived. Because MAP can affect multiple organ systems, management of this disease requires many specialists to orchestrate care of these patients.

Conclusion

In summary, MAP is a rare and highly aggressive disease. However, the unique nature of the skin lesions provides clinicians with an important clinical clue that can establish the diagnosis.

We are currently developing a national MAP registry. We hope to include all cases of cutaneous and systemic disease to better document the natural history of the disease and the long-term response to therapeutic interventions. From extensive personal communications that started after we treated our first patient, we learned of several other cases that went unreported. This makes awareness of MAP of vital interest to clinicians who care for patients with systemic diseases.

Aixa Toledo-Garcia

Aixa Toledo-Garcia, MD, is a board-certified rheumatologist at the Center for Rheumatology and co-medical director of the Steffens Scleroderma Center in Albany and Saratoga Springs, N.Y. She is working with other physicians to formulate new and effective diagnostic and therapeutic interventions for MAP.

Jessica Farrell

Jessica Farrell, PharmD, is a clinical pharmacist at The Center for Rheumatology, co-director of the Steffens Scleroderma Center and assistant professor at Albany College of Pharmacy and Health Sciences in Albany, N.Y. She is currently serving as a member of the ARHP Practice Committee and the ACR/ARHP Drug Safety Subcommittee.

Lee Shapiro

Lee Shapiro, MD, is director of the Steffens Scleroderma Center in Albany and Saratoga Springs, N.Y., and clinical professor at Albany Medical College.

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