From the IRA

Dear all

Greetings from the IRA.

Included are reports on the patient support groups/patient education meetings done in various parts of the country in the last quarter and some other useful information.

From the APLAR:

Dear Member, National Organizations’ Presidents and Secretaries

The APLAR-ASia-Pacific Initiative for Rheumatology Nurse Education (APLAR-ASPIRE)
curriculum comprises a series of educational modules on rheumatology care. These were
developed with nurses in mind by a working group of leading rheumatologists and rheumatology nurse specialists. Currently, three core training modules pertaining to rheumatoid arthritis are available:patient assessment; treatment and self-management education; and disease monitoring and follow-up care. These modules have been reviewed and endorsed by the APLAR Education Committee.

At the launch of the APLAR-ASPIRE Education Grants last year, we have had some MNOs who have benefited from the program. Positive feedback was gathered and hence would like to encourage MNOs who are yet to apply for this grant to do so this year. The APLAR-ASPIRE Education Grants aim to improve rheumatology patient care through quality medical education. These grants are available specifically to support educational activities related to the ASPIRE core training modules.

Two types of awards are available:
1. APLAR-ASPIRE Education Grant I
SGD 1000 will be awarded to support the organization of small meetings with at least 20 participants
2. APLAR-ASPIRE Education Grant II
SGD 2500 will be awarded to support the organization of larger meetings with at least 50 participants

Rheumatologists, nurses, hospitals, healthcare centres, academic institutions, professional
associations, patient societies, research bodies with an interest in rheumatology are eligible to apply. Please complete the application form and submit it to us at secretariat.aplar@gmail.com at least 8 weeks before your event. All applicants will be notified regarding their applications about 2–3 weeks from the date of submission. Please note that only one application can be received from each MNO/Institutions per year. 

Please click here for more information about the APLAR-ASPIRE Education Grants.

Best Regards
Deborah Halim
Secretariat
Asia Pacific League of Associations for Rheumatology
www.aplar.org

 

Patient Education meets:

5th May 2019–World Lupus Day Celebrations!

It was a surreal moment to have 65+ patients with 70+ family members, which together came to about 140+ people. ALL JOINED FOR ONE COMMON CAUSE.

Lupus Awareness and Support.

This Lupus day was nothing short of a phenomenal event.

In October 2018, I was approached by five Lupus patients I have been treating them for many years. They all had one cause in mind, which was to help other Lupus patients with Financial Aid and Mental Support.
They were highly driven by the cause to spread Lupus Awareness, its symptoms, treatment, and its various other manifestations.

They asked me, “How should we go about this, doctor?”
[Inside my heart, I knew this group was a smooth blend of energetic youngsters and elderly mentors.]
That was the start to the journey of "Lupus Trust India."

A group of Lupus patients, for them, by them. They came to me asking, "Doctor what more can our patients' support group have than to have their own doctor advising and guiding us." They worked day in and day out and registered Lupus Trust India as a Public Charitable Trust. I was so pleased to join their journey as a mentor, thereby fulfilling the Hippocratic Oath I took.

Fast-forwarding to 2019 May, the Trustees asked me whether they can go with a theme every year, and this year they selected "Lupus and Mental Health." For a Rheumatologist like me, I didn't even have to give it a second thought. I knew this was what every Lupus Patient and their families needed to address with utmost importance.

The team,Dr. Shenoy’s CARE, Kerala Arthritis and Rheumatism Society and Lupus Trust India spoke on behalf of each Lupus patient sitting there. Bringing tears of joy to our eyes, they addressed every topic concerned with fighting Lupus.

1. Right from Social Isolation to
2. Unemployment of the chronically ill ones.

One of those topics which have a high level of stigma attached to it

1. ‘Lupus, Marriage and Reproduction’. and how relationships have come to a sad end due to lack of acceptance for the disease.

The event was inaugurated by the esteemed presence of Dr.Binoy J Paul, Indian Rheumatology Association Kerala Chapter's President with his words of wisdom. He emphasized on the importance of how a group of Lupus patients and their relatives can bring about change; not only for each other but also from policy making point of view.

Malayalam cinema's heartthrob "Aparna Balamurali" graced this unique day with her therapeutic voice and a sound message to all on Lupus Awareness and Fundraising for the financially backward. She extended her support in every way possible.

Dr. Yogesh Singh (Consultant Rheumatologist Manipal Hospital Bangalore), a very dear friend of mine, spoke about the importance of Lupus movements in India and how as a group Lupus Patients can seek government's help.

Brig. Dr. Narayanan (Consultant Rheumatologist CARE) spoke about various latest developments in diagnosing Lupus—how the affordability of these tests and diagnosing methods will increasingly become more readily available to the general public.

Dr. Arun, Psychiatrist, with his vast experience of treating the chronically ill spoke on how Lupus and Mind have a relationship for the majority of times.
And how they could fight this.
Undoubtedly one of the most relished sessions that made them feel they are not alone.

Dr.Shivaraj Rao motivated them and pumped them up with positivity.

The event was wrapped up with a Lupus Fighters Group Discussion and an interactive session. I always tell them about how we, as doctors have certain limitations when it comes to helping a patient mentally. The power of a group of patients sharing their experiences and knowledge on how they battled similar situations can stand second to none.
If one were to ask me, what I found most beautiful about this Lupus Day 2019, I would without a nudge say that it was their own initiative and, more importantly, an interactive session. I feel blessed to have been able to connect them with each other. Even at CARE, during my consultation hours, I have seen one patient accompanying the other for regular follow-ups. A closely knitted family. What more can I ask for, as a doctor!!!!!)

To have patients flying in from various parts of India, right from Karnataka to Tamil Nadu, says it all! They took the effort and planned their trip well ahead of the event. They were purely hoping to meet another Lupus colleague and share their love.

In short, this was a beautiful and memorable event which we relished, and hopefully, it will set out as a precedent for future patient meetups.

 

Lupus Patients’Meet, Bengaluru

29th June, Saturday, this meet was held at St John's medical colleges hospital–Lupus patients group, which meets once a month.
Patients talk about how they are coping, reassure other patients.Patients’ children who come from poorer section of the society are given financial aid to continue education.Support is provided for medications.They have a very active Medico social welfare dept.,which gets involved in this.Patients’ morale is boosted and their self-confidence goes up.Two patients spoke about‘Positive Thinking’ which was very good.It was a great opportunity for me (Dr Mahendranath) to participate.
This (Dr.Vineeta Shobha's) model can be adopted in every institution.In individual practices, several people can join and have a medico social worker either volunteer or paid, and this can go a long way in increasing compliance and helping patients.

 

Patients and children with Dr Mahendranath, MSW coordinator Mr Ebenizer, and Dr Vineeta Shobha

Lucknow ‘Game of Thrones’ Meet :

A symposium ‘Celebrating Rheumatology’ was organized by the Department of Rheumatology in collaboration with the Society for Osteoarthritis Research from 9th to 11th May 2019, at the convention centre of King George’s Medical University, Lucknow. The symposium was a tribute to the founder Head of Department and the President of the society, Prof. Siddharth Das, who after serving Rheumatology for 32 years attained superannuation. Dr Puneet Kumar was the Organizing Secretary and Dr Urmila Dhakad was the Scientific Chairperson of the symposium. The symposium had eminent Rheumatologists of the country as speakers, namely Dr A.N. Malaviya, Dr Ashok Kumar, Dr Ved Chaturvedi, Dr V. R. Joshi, Dr Sukumar Mukherjee, Dr Rohini Handa, Dr DebashishDanda, Dr R.N. Mishra, Dr Amita Agarwal, Dr Narsimullu, Dr Rajeshwari, and others. The symposium also had some international speakers, namely Dr R, R Singh, Dr Joel Bloc, Dr Ali Mobasheri, Dr BenyAntony, Dr Changhai Ding, and Dr Meenakshi Jolly.

The symposium covered all the major topics of Rheumatology in the three-day scientific program. Along with this, the research work done in the Department of Rheumatology under the mentorship of Prof Siddharth Das in the field of Rheumatoid Arthritis, Osteoarthritis, and Fibromyalgia was showcased. The second day of the symposium on the occasion of World Lupus Day, discussed all the aspects of the disease including the Obstetric aspect. Dr Vineeta Das and Dr Amita Pandey from the Obstetrics and Gynecology Department of KGMU also presented their views on the occasion. The Highlights of the symposium were two games namely ‘Clash of Titans’ and ‘Game of thrones.’ In the clash of Titans, there were four teams with their team leaders, namely: West Zone—Dr V.R Joshi, North zone—Dr A. N Malaviya, East Zone—Dr Sukumar Mukherjee and South zone—Dr A.N. Chandrasekara. Each team presented a difficult case to the other team and based on the discussion and final diagnosis Dr V.R Joshi’s team was declared as winner. In the game of thrones, four Lords presented their views as to which disease is the most important in the field of Rheumatology. Dr Rohini Handa spoke on Rheumatoid arthritis, Dr S Shanker on SLE, Dr P.D Rath on Osteoarthritis and Dr B.G Dharmanand on Fibromyalgia. Dr S Shanker was declared as the King of Rheumatology by the audience and the judges.

During the inauguration ceremony, Dr Siddharth Das was felicitated. Dr A. N. Malaviya in his address during the inauguration described Dr Siddharth Das as a person who specialized in thinking ‘Out of the box.’ Dr Siddharth Das was also felicitated by his students who had come from all across the country to attend the symposium. Overall, the symposium turned out to be a success because of the interesting Scientific Program and was well attended by a number of doctors from all over India.