Healthcare services for LAM (Lymphangioleiomyomatosis), a very rare disease, are successfully delivered to patients who either visit the hospital or connect remotely, thanks to Pamukkale University’s strong infrastructure and pioneering telemedicine applications. The number of patients followed at the clinic, which receives referrals from a wide geographical area including the Turkish Republic of Northern Cyprus, has rapidly reached 25.

Test That Eliminates the Need for Biopsy at Pamukkale University

The serum VEGF-D test kit, which is essential for the definitive diagnosis of LAM disease but not available in Türkiye, has been procured from abroad and included within a scientific research project conducted at Pamukkale University Hospital. Thanks to this test, which is offered completely free of charge, Pamukkale University has become a center for appointment requests from all over Türkiye.

LAM Clinic Türkiye Director Göksel Altınışık Ergur made statements regarding World LAM Awareness Month activities: “LAM, a lung disease known to have an incidence of 20 per million, especially in women, had not received sufficient attention due to its rarity. Worldwide, efforts to increase awareness of this disease among the public, patients, and even physicians have been increasing in recent years. Our Türkiye LAM Clinic is part of this movement in collaboration with patient representatives from the United States and Europe, as well as China and Japan.” Prof. Altınışık Ergur stated that the most important need for the definitive diagnosis of LAM disease is the serum VEGF-D level test, which allows diagnosis without biopsy, and that since this test cannot be performed in Türkiye, he procured the test kit from abroad and enabled it to be conducted at Pamukkale University Hospitals within the scope of a scientific research project. He added that, due to the high number of appointment requests from patients from all over Türkiye for this free test, he organized a meeting aimed at providing an opportunity for patients to meet and support one another, as well as to receive information about the disease from relevant specialists.

Strong Institutional Support at Rectorate and Dean Level

Fourteen LAM patients who came to Denizli from different provinces of Türkiye met with Pamukkale University Rector Prof. Dr. Mahmud Güngör and Faculty of Medicine Dean Prof. Dr. İbrahim Türkçüer following their examinations and medical tests completed at Pamukkale University Hospitals on June 12. In this meeting, which included high-level administrative participation, patients and their relatives had the opportunity to directly express their concerns and felt that they were not alone.

Sharing the institutional vision in the field of rare diseases during the visit, Pamukkale University Rector Prof. Dr. Mahmud Güngör emphasized the university’s scientific capacity and stated: “As Pamukkale University, we act not only as a regional healthcare center but also with the vision of becoming a national reference point in areas requiring global solutions such as rare diseases. The first internationally accredited LAM Clinic in Türkiye established within our institution and the free serum VEGF-D testing infrastructure operated in our hospital are the most concrete indicators of this commitment. With our Faculty of Medicine and strong academic staff, we will continue to mobilize all our technological and scientific resources to touch the lives of our patients. We are proud to be a healing center for patients coming from all over our country and from the Turkish Republic of Northern Cyprus.”

Multidisciplinary Approach by Pamukkale University Scientists

Within the scope of World LAM Awareness Month activities, Pamukkale University faculty members made a significant contribution to the patient education and information-sharing meeting held at the Denizli Medical Chamber hall. The team that presented scientific content and answered patients’ questions included: Prof. Dr. Göksel Altınışık Ergur (PAU Department of Chest Diseases), Assoc. Prof. Dr. Derya Kılıç Güler (PAU Department of Obstetrics and Gynecology), Prof. Dr. Orçin Telli Atalay (PAU Faculty of Physiotherapy and Rehabilitation), and Asst. Prof. Dr. Gökhan Öztürk (PAU Department of Thoracic Surgery).

The panel also featured guest experts Assoc. Prof. Dr. Mustafa Vayvada from Koşuyolu High Specialization Training and Research Hospital and Dr. Nazlı Çetin Beyaz from Afyonkarahisar State Hospital.

A Model with International Potential

This meeting, hosted by the Pamukkale University Rectorate and Faculty of Medicine, and supported by the Denizli Medical Chamber and representatives from the business community of Denizli such as Faik Pişkin, Yüksel Arpacı, Cemal Gürsel Özdemir, and Çiğdem Ada, is the first of its kind in Türkiye.

Emphasizing that this event carried out under the umbrella of Pamukkale University constitutes a pioneering model that could in the future be opened to international participation in the field of rare diseases, LAM Clinic Türkiye Director Prof. Dr. Göksel Altınışık Ergur stated that patients expressed their satisfaction, noting that they were participating in a patient-centered and highly informative meeting for the first time, which helped them become more visible and have their rights recognized and their voices heard, thereby making the organizing team feel that their efforts had been rewarded. She concluded her remarks by saying: “This pioneering event, which can serve as a model for future patient, caregiver, and physician meetings for LAM and other rare diseases and has the potential to be opened to international participation, was very fitting for World LAM Awareness Month. Everyone’s contribution was highly valuable.”