The first focus-group workshop on lupus patients and caregivers, held last November 2009 at University of Santo Tomas Hospital, Manila was a big success. The activity was brilliantly planned and facilitated by the core group headed by Dr. Sandra Navarra (renowned rheumatologist and head of LUISA project), Dr. Marthony Basco (paediatrician and facilitator in group dynamics and training program sessions), Dr. Lyndon John Llamado, and Robelle Tanangunan (lupus patient and research assistant).

Keeping the advocacy of enlightening lupus patients and their caregivers as well as to improve their quality of life, LUpus InSpired Advocacy (LUISA) project, in coordination with the Lupus Group of Panay, had started to spread the patient enlightenment program outside Manila. The first regional workshop was held last 16 January 2010 at Iloilo Medical Society, La Paz, Iloilo City. Despite a stormy weather, 35 patients and 8 caregivers registered and actively participated, shared their thoughts and insights in the workshop. Spearheading the activity, Dr. Sandra V. Navarra encouragingly introduced the primary goals of spreading awareness and improving long term management on lupus. Four rheumatologists, namely Dr. Roger Dulos, Dr. Carol Arroyo (President of the Philippine Rheumatology Association [PRA]), Dr. Ma. Nida Ferrer, and Dr. Ma. Jovie Gerona unselfishly shared their time to facilitate the workshop. 

Dr. Caroline Arroyo, PRA president, opened the workshop and welcomed the participants

Dr. Sandra Navarra introduced the goals of the workshop.

 Patients and caregivers actively participated in the workshop.

The workshop was made possible with the help of the RETFI/ LUISA and PRA staffs.

11 dedicated internal medical residents from three training hospitals
Summarized the discussions on the four central aspects.

Summary of Results:

Physical Aspect:
Facilitator: Roger Dulos, M.D.
The physical aspect deals with the physical capabilities or functionality of the patient and caregivers. This aimed to know the changes in their activities after the diagnosis of SLE.  Not surprising, most of the patients and caregivers were concerned more on taking care of themselves or the patient, respectively. Difficulty in performing tasks is the most oppressing problem they had, because of the aches and pains they endure. Thus, their alternative way to cope is to hire or ask help from other people. By doing so, they were able to perform the basic chores that they had to, like self-care. Other concerns involve job and limited outdoor activities. Some had to shift from one job to another while others became entrepreneurs by putting up small businesses to earn after resigning from the previous job because of illness. Due to prohibition on sunlight exposure, they managed to continue participating in indoor sports to stay fit. Others opted to stay at home and lessened socialization due to fear of their physical appearance.

Psycho-emotional Aspect:
Facilitator: Nida Ferrer, M.D.
The Psycho-emotional aspect was started with a question  “Kamusta ka na  ?”( means how are you - in Ilonggo)  posted to the participants. Majority answered the common quick response “I’m Ok.  BUT...” The aim of this aspect is to deal on the emotive state of the patients and caregivers in looking at the disease. Other structured questions asked were “May nagbago ba sa iyo ()”, “Papano na yan ()”, and “May maitutulong ba ako sayo ()”. After the quick response “ I’m ok”, most of them expressed their deeper reasons for the “BUT”. Majority had been coping and accepting what they had.  Common concerns were the sustainability in terms of clinic follow up and fear of losing loved ones. Strategies for coping include encouragement from support group, families and faith in God.

Social Aspect:
Facilitator: Caroline Arroyo, M.D.
Social aspect deals with relationships that are based on TRUST. The activity aimed to identify circle of influences and qualities that molded the participants in establishing trust. Immediate family members, physicians and friends were the influential persons whom the patients’ relied on. Common qualities they looked for were being religious, understanding, optimistic, had self-control and willingness to accept the situation. Their strong trust to their doctors helped them to comply with their medicines and check-up schedules. Family, friends and support groups paved way in acceptance of the situation/ illness.

Spiritual Aspect:
Facilitator: Ma. Jovie Gerona, M.D.
Spirituality means acknowledging an individual or idea who is supreme, regardless of membership to any organized religion. It is divided into 3 subcategories: FAITH, HOPE, and TRUST. Majority of the participants have faith, hope and place their trust in GOD. They turn to prayers to seek for His favor. Finally, believing and trusting in one’s abilities is a good help in making the participants more hopeful.

MADAMAO NGA SALAMAT SA INYO TANAN!!!---Lupus Group of Panay

Facilitators with Dr. Sandra Navarra.

Part II MEETING WITH THE RHEUMATOLOGIST AND THE TARGETED RHEUMATOLOGISTS

The second part of the Iloilo meeting was a lecture held at St. Paul’s hospital SPICE building. Dr. Sandra Navarra brilliantly and comprehensibly talked on updates in managing back pain and brave new world of biologics. The lecture was facilitated by the Internal medicine residents of the Saint Paul’s Hospital. The audience was comprised of consultants, residents, interns and medical students from various departments and specialties. Again the renowned Rheumatologist received much praises from her doctor-audience as they were enlightened by the lecture.

Dr. Sandra Navarra talking to the young rheumatologists; emphasizing their big role in helping lupus patients.

 
Behind is the new center for bone and joint center at the SPICE building of Iloilo St. Paul’s Hospital