Ritu Jain, DEBRA International President travelled to Thailand to take part in the first-ever EB meeting, which was held with the support of the Thai Rare Disease Foundation (TRDF) as well as dermatologists.
Approximately 15 patients/family members and 14 clinicians/fellows attended the meeting at Chulalongkorn Hospital on 24th November 2022. Ritu was delighted to welcome Lie Taguchi, ex-member of the DEBRA International Executive Committee to the meeting. Logistical arrangements were managed by Rapport, a medical distributor. The main objective was to share information on what DEBRA is and how EB patients could be helped. Another was to try to shift prevailing mindsets that patient groups are truly patient – and not clinician – led.
After an initial presentation on what DEBRA International is, and how DEBRA groups can be set up and what they can achieve and contribute, a roundtable discussion ensued. Patients and family members had many questions and requests: how could they smoothen the process of their children joining school? What was the best way to help children settle in and cope with the stigma/teasing/discrimination, etc.? Could they get access to information on wound care or nutrition? Could the materials be translated into Thai? Would their children be able to lead normal lives? Refreshingly, not one parent asked how they could access free dressings (Thailand does not subsidise dressings). Emotional parents wanted reassurance, guidance, information, and open channels of communication.
Dr Duang, a clinical geneticist and head of the TRDF, made a persuasive appeal to patients to take the lead in forming a group and spoke to clinicians on the importance of supporting patient-led initiatives.
Ritu initiated a list of names and phone numbers so that a ‘Line’ group could be formed. However, registering an organisation in Thailand is complicated and will need time and dedication. Therefore, Dr Duang and Ritu proposed some initial steps:
A DEBRA group to be formed on the ‘Line’ app by one of the patients
Such DEBRA group to ‘register’ with the TRDF.
Information topics to be identified by patients.
Rapport to facilitate the translation of guidelines as per patient request.
Patients to continue to liaise with DEBRA International and with TRDF to access resources (information sheets on schooling for instance) as well as other patients to grow the patient pool.
The DEBRA group to try and identify leaders among the patients towards registering an independent DEBRA organisation for Thailand.
The meeting concluded with social mingling and photographs, and payment of 2,000 TBH to each family as an honorarium for their time.
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