सशक्त साथी, स्वस्थ जीवन – नशा और टीबी से मुक्ति

आइए, एक साथ मिलकर एक ऐसा समाज बनाएं जहाँ हर साथी सशक्त हो, और हर जीवन हो स्वस्थ। 

Anuj Johari Patient Advocate 

नशा, जीवनशैली से जुड़ी बीमारियों और टीबी जैसी चुनौतियों से लड़ने के लिए साथियों की भागीदारी ही असली बदलाव की कुंजी है।

सशक्त साथी, स्वस्थ जीवन सिर्फ एक नारा नहीं, एक आंदोलन है – एक नई सोच, एक नई शुरुआत।

नाडा इंडिया फाउंडेशन के साथ जुड़िए और बनिए बदलाव के वाहक।

धन्यवाद। 

Breaking Barriers: A Dialogue on Challenges in Social Work and Community Well-being

During a recent discussion at the XI Indian Social Work Congress 2023, Suneel Vatsyayan* had a thought-provoking conversation with Dr. Sudershan Passupuleti, PhD, a Professor at the School of Social Work, University of Texas Rio Grande Valley. This insightful dialogue took place within the corridor of the National Urdu University guest house Hyderabad.

The conversation revolved around the theme "Leave No One Behind," shedding light on the challenges faced by professional social workers in reaching those who need assistance the most.

The Stigma Surrounding Help-Seeking: In today's society, certain groups, including adolescents, youth, women, and girls, often find it challenging to open up about issues such as non-communicable diseases (NCDs), addiction, trauma, domestic violence, and mental health. The reluctance to talk about feelings and seek help perpetuates a taboo that hampers effective service delivery at the grassroots level.

Nada Acudetox Counselling India Network: Suneel Vatsyayan shared insights into the Nada Acudetox India Network, an initiative aimed at promoting barrier-free health delivery services among marginalised communities. This network emphasises community wellness for behavioural health, encompassing addiction,NCDs and its risk factors, mental health, and disaster and emotional trauma.

Professional Social Worker's Role in Calming the Inner Self: The dialogue delved into the question of whether professional social workers can teach clients to relax from the inside out. By inducing a sense of calm and quieting symptoms, interventions aim to stimulate one's inner energy, bringing individuals into a more balanced state conducive to communication.

Primary Prevention and Engaging Clients: The conversation extended to the primary and primordial prevention levels of intervention. Can social workers treat clients before completing assessments and diagnoses to ensure a cooperative and calm environment for effective diagnosis?

Challenging Assumptions: Several critical questions were raised, challenging traditional approaches. 

• Can social workers help clients in denial about the need for treatment? 
• Is it necessary to confront clients/patient about  their drug use or the trauma they have experienced?
• Is it possible to make a client relax without them losing control?

Overcoming Barriers to Engagement: The dialogue explored ways to engage clients facing various challenges, such as needy and fearful clients, those with low self-esteem and lack of hope, and trauma victims fearful of interpersonal relations. The goal is to initiate treatment at realistic levels, fostering participation and progression.

Continuity of Treatment: A vital question emerged: can clients return at any time, especially following a relapse, and still experience the benefits of treatment? This highlights the importance of creating a supportive and flexible treatment environment.

Initiating a Global Dialogue: This blog post aims to initiate a broader dialogue on the challenges faced by society and the community in general. We invite social workers, professionals, health advocates and individuals to share their insights, experiences, and solutions. How can we collectively overcome these challenges and truly leave no one behind?

Let your thoughts and experiences flow in the comments below. Together, we can build a more inclusive and compassionate society. nadaindia@gmail.com Mobile 9810594544 

गलतियाँ बहुत की मैंने|...ना जाने मैं आज कहाँ होता| मेरे इस सफर में ये डूबता हुआ सूरज हर वक़्त मेरे साथ था|

*वन्या गुप्ता एक उत्साही नवोदित लेखिका हैं, जिन्हें शब्दों का शौक है। वर्तमान में वह साहित्य में स्नातकोत्तर कर रही हैं| वह अपनी शैली के साथ प्रयोग करते हुए कई विषयों पर लघु कथाएँ और लेख लिखती हैं| पिछले लगभग 2 वर्षों से वह नाडा यंग इंडिया नेटवर्क से जुड़कर भारत से तंबाकू की समस्या दूर करने में प्रयासरत है|

गलतियाँ बहुत की मैंने| अगर उस दिन मेरे घर वाले मुझे नशा मुक्ति केंद्र तक नहीं ले जाते तो ना जाने मैं आज कहाँ होता| मेरे इस सफर में ये डूबता हुआ सूरज हर वक़्त मेरे साथ था| एक वक़्त में मैं भी इसके साथ डूब रहा था लेकिन आज मैं इसके साथ डूबता नहीं, बल्कि अगले दिन इसके साथ जागकर अपने जीवन में रोशनी भरता हूँ|

शाम ढल रही थी| कहने को तोआज का दिन भी बाकी दिनों जैसा ही था| ऐसा कुछ अलग तो नहीं हुआ था आज, लेकिन मुझे पुराने दिन बहुत याद आ रहे थे| इन्ही वादियों में मैंने अपनी पूरी ज़िन्दगी बिताई थी| कितनी ही शामे़ मैंने ऐसे ही बादलों के पीछे छुपते हुए सूरज को देख के बिताई थी| पर आज कुछ खास था| आज मेरी ज़िन्दगी को बदले हुए दो साल पुरे हुए थे| शायद इसीलिए मुझे आज ये सब बातें याद आ रही थी| अगर दो साल पहले आज के दिन मैंने सही फैसला न लिया होता तो शायद आज मैं यहाँ बैठ कर इस सूरज से बाते नहीं कर पा रहा होता|

बचपन की बातें ज़हन में बहुत गहरी छाप छोड़ जाती है| मुझे कोई तकलीफ नहीं थी बचपन में, ऐसी कोई कहानी नहीं है| माँ और पापा दोनों का भरपूर प्यार मिला मुझे| मेरी माँ खाना बनाते हुए एक बहुत प्यारा सा गाना गया करती थी| मैं भी वहीं बैठ कर उनका गाना सुना करता था| स्कूल से आते वक़्त रास्ते से छोटे-छोटे पीले रंग के फूल तोड़ के लाता था| माँ हर बार वही फूल देख कर भी ऐसे खुश हुआ करती थी जैसे वो दुनिया के सबसे खूबसूरत फूल हों| जब पापा शाम को घर आते थे तो हम साथ बैठ कर चाँद को देखा करते थे और पापा मुझे  बड़े-बड़े लोगों की कहानियाँ सुनाया करते थे| मुझे कभी किसी चीज़ की कमी नहीं महसूस हुई| पर एक गलत कदम ने मेरी सारी दुनिया इधर की उधर कर दी| आठवीं कक्षा की बात है| दोस्तों के साथ घूमना-फिरना मेरा हर रोज़ का काम था| एक दिन मेरे एक दोस्त ने मुझे पुराने पेड़ के पास वाली खली जगह आने को कहा| अपने दोस्त की चिंता मुझे वहाँ तक खींच ले गयी| वहाँ जाके मुझे जीवन का वो राज़ पता चला जो दिखता भले ही मामूली सा हो लेकिन चाहे तो किसी की हँसती-खेलती ज़िन्दगी को जला के राख कर सकता है| सिगरेट| मुझे पता था मुझे ये नहीं करना चाहिए| मुझे पता था ये मेरे लिए गलत है| लेकिन दोस्तों के साथ मुझे पता भी नहीं लगा मैंने कब पहली बार सिगरेट को हाथ में पकड़ा| पहली से दूसरी| दूसरी से दसवीं| न जाने कब ये मेरा रोज़ का हो गया| जिन शामों में मैं पहले छत पे बैठ कर सूरज को देखा करता था, वही शाम थी, वही सूरज था, पर मेरे साथ अब सिगरेट थी| मैं देखता रह गया और ये मेरी ज़िन्दगी का हिस्सा बन गयी, मेरा हर रोज़ का किस्सा बन गयी| जब खरीदने के लिए पैसे कम पड़ने लगे तो मुझे झूठ बोलना भी आ गया| 

आवश्यकता ही आविष्कार की जननी है| ये बात मैंने सिर्फ घरवालों से झूठ बोलने में लागू की|

इन बातों को दो साल बीत गए| सिगरेट मेरी ज़िन्दगी का ऐसा हिस्सा बन गई थी की मेरे लिए ये बहुत आम बात हो गयी थी| कहानी यहाँ ख़तम नहीं होती| अभी मुझे और भी गलतियां करनी थी| दसवीं कक्षा में मैं और मेरा दोस्त एक शादी में जा पहुंँचे| जाकर देखा की सब बड़े आदमी एक तरफ इकठा होकर कुछ पी रहे थे| मैंने अनजाने में अपने दोस्त से कहा "चल हम भी जाकर देखते हैं ऐसे क्या है|" मेरा दोस्त हँस दिया और कहने लगा "यहाँ बड़े लोगों के बीच में नहीं| तू कल मुझे अपनी वाली जगह मिलियो| वहाँ पिलाऊँगा|" अगले दिन जब मैंने पहली बार वो पिया तो मुझे लगा कोई कैसे पीता होगा इसको| मेरे दोस्तों ने कहा "शुरू-शुरू में अजीब लगेगा तू पीकर तो देख अच्छे से|" इस तरह शुरू हुई मेरी और शराब की दास्ताँ| फिर ये भी मेरा रोज़ का हो गया| रोज़ मेरा पीकर घर आना| रोज़ मेरे पापा का गुस्सा करना| रोज़ मेरी माँ का हम दोनों के झगड़े के बीच में बोलना| अच्छा तो नहीं लगता था पर क्या करता? बुरी लत का मारा था|

दो साल और ऐसे ही निकल गए| उन्नीस का हो गया मैं| कॉलेज में आ गया| यहाँ आकर मेने फिर एक और गलत कदम उठाया| मुझे लगा था मैं तो सिगरेट और शराब दोनों का आदी हूँ बड़ी आसानी से दोस्त-यार बनेंगे और फिर सब साथ में पिएंगे| यहाँ कॉलेज में आकर देखा तो सब लोग कुछ और ही चीज़ के आदी थे| हेरोइन| चित्ता| ड्रग्स| दोस्तों से कहीं मैं पीछे ना रह जाऊं इस होड़ में मैंने चित्ते से भी दोस्ती करली| कमाल ये हुआ की अब मुझे डाँट पड़नी भी बंद हो गयी| मेरी गलती का गवाह बनने के लिए न तो सिगरेट का धुआँ होता था और न ही शराब की बदबू| मेरे घरवालों को लगा मैंने सब नशे छोड़ दिए| अब मैं बिना किसी डर के ड्रग्स में डूबने लगा| मेरी ज़िन्दगी और आसान हो गयी| लेकिन बस कुछ ही दिनों के लिए| 

उसके बाद मेरे सामने एक नयी चुनौती आई| पैसे की| नशा करना मैंने सीख लिया और उस नशे के लिए पैसे चुकाने पड़ते हैं ये भी सिख लिया| बस वो पैसे कमाना नहीं सीखा था| कुछ दिन तो घर में झूठ बोलकर पैसे मांगता रहा| पर ऐसे भी कब तक चलता? अपनी लत के हाथों मजबूर होकर मैंने चोरी शुरू करदी| यहाँ पापा के बटुए से तो वहाँ माँ के चीनी के डब्बे से, कभी कम तो कभी ज़्यादा, पैसे चोरी करने लगा| जब ये भी काम पड़ने लगे तो पडो़सी के घर से, आते जाते किसी इंसान से, जहाँ मौका मिले वहीं से| मैं पूरी तरह से इन चार चीज़ों के काबू में था- सिगरेट, शराब, हेरोइन और चोरी| हाथ की सफाई मेरे लिए बच्चों का खेल बन गयी थी| 

इसी सिरे में एक दिन मैंने अपने चाचा की जेब में हाथ डाला| पकड़ा गया| मेरे माँ बाप के सामने लाके मुझे खड़ा कर दिया गया| मेरी हर लत, हर चोरी का खुलासा किया गया| मेरी माँ के आंसू| पापा का गुस्सा| परिवार के ताने| ज़िन्दगी ने कभी इससे ज़्यादा ज़लील नहीं किया था| उस दिन मुझे समझ आ गया था की मुझे क्या करना है|

मेरे घरवालों ने मुझे नशा मुक्ति केंद्र भेज दिया| 6 महीने रहा मैं वहाँ| ज़िन्दगी के छोटे-छोटे टुकड़ों को समेटना सीखा मैंने| जिस गलत राह पे मैं चल पड़ा था वो छोड़ कर पहली बार सही रास्ता देखा मैंने| वहाँ के लोगों को जाना-पहचाना तो पता चला किस्मत क्या-क्या खेल पलट देती है| मुझे तो भगवान ने सब कुछ दिया था और मैं उसे अपने ही हाथों से बर्बाद कर रहा था| अब मुझे ये गलती दोबारा नहीं करनी थी| मन में ख्याल आया की कहीं फिर तूने दोस्तों के चक्कर में ये गलतियाँ दोहरा ली तो? मेरी खोई हुई पहचान जो मुझे इतनी मुश्किल से वापिस मिली थी, उसे में दोबारा नहीं खो सकता था| इसीलिए मैंने कर्मा वेलफेयर सोसाइटी की ओर खुद को मोड़ दिया| वहाँ मेरे जैसे दूसरे परेशान लोग आया करते थ| इस नशे के दलदल से बाहर निकलने में मैं उनकी सहायता करने लगा| बहुत दिन मन लगा कर मेने उनकी सेवा की| जब भी कोई ठीक होकर वहाँ से जाता था, अपने आप को सँवारता था, तो मुझे लगता था की मैंने अपनी एक-एक गलती का प्रायश्चित्त कर लिया हो| उन सभी को आगे बढ़ता देख मैंने भी अपने आपको एक दूसरा मौका देने की कोशिश की| आज मैं एक ड्राइवर हूँ| मेरी अपनी एक छोटी सी ज़िन्दगी है| छोटी-छोटी खुशियाँ है| पर बड़ी गलतियों से अब मैं दूर रहता हूँ| जब वक़्त मिलता है तो वापिस दुसरों की सेवा करने कर्मा वेलफेयर सोसाइटी पहुँच जाता हूँ|

गलतियाँ बहुत की मैंने| अगर उस दिन मेरे घर वाले मुझे नशा मुक्ति केंद्र तक नहीं ले जाते तो ना जाने मैं आज कहाँ होता| मेरे इस सफर में ये डूबता हुआ सूरज हर वक़्त मेरे साथ था| एक वक़्त में मैं भी इसके साथ डूब रहा था लेकिन आज मैं इसके साथ डूबता नहीं, बल्कि अगले दिन इसके साथ जागकर अपने जीवन में रोशनी भरता हूँ|

Keep THE Promise : Voice of Young People & People Living With NCDs for Policy action #UHCDAY

#HealthForAll   #UHCDay

For details 

Ms Sutapa Biswas   |   Executive Director

CANCER FOUNDATION OF INDIA

47/2D Selimpur Road, Kolkata - 700 031. INDIA

W: +91.8961.313131

Tahira Kashyap Khurana is a film maker & breast cancer survivor shared her life story

Pallavi briefed Tahira Kashyap Khurana about Nada India and Young India Network for Good Health . Tahira Kashyap Khurana is a film maker and breast cancer survivor shared her life story @NCDs she mentioned alcohol as one of the risk factors.   The Economic Times SDGs Impact Summit 

Nada India team @ The Economic Times SDGs Impact Summit 2019 in Delhi 

on 16th Nov 19 

Patient Champion Spotlight: Jyotsna Roy

August 2, 2019

During the 2019 World Health Assembly (WHA) in Geneva, Global Health Council provided several patient champions with the opportunity to share their stories, and contribute to discussions around universal health coverage (UHC). Following the Assembly, we sat down with each patient champion to get their thoughts on WHA. Hear from our patient champion Jyotsna Roy who volunteers with the Nada India Foundation. Nada India has been creating the spaces & nurturing diverse networks of community-based initiatives amongst the marginal and most at-risk populations in the urban and rural. Through its capacity building work Nada India has enabled the vulnerable adolescents & youth to make choices for healthy ways of living. Nada India has also included in its programmes senior citizens and women from the “urban villages”. Gender equity is a strategic objective of Nada India in its vision for a Gender Equal and Just society. Additionally, Nada India works under the framework of the Convention of the Rights of Children, CRC, with children, adolescents and PLWNCDs through the Young India Network for Good Health.

Tell us a little about yourself?

I am an Indian woman and my name is Jyotsna Roy. I have been diagnosed with rheumatoid arthritis, which has impacted on my mobility, motor flexibility and sometimes the acuity of my brain. However, on a positive note it has made me sharply aware of the signals my health conditions give me. I am prepared for the long haul of this disease and the consequent morbidity. I am also aware that the medical insurance that I have does not cover this disease. In spite of having a condition which requires close daily monitoring and self –management, I travel and work on international assignments and also in post conflict situations.

I advocate for general “good health and wellbeing” among women who have rheumatoid diseases, specifically focusing on youth with mental health and substance dependence including alcoholism. Nada India, the organization I volunteer with, works with youth groups and also does work through community-based mobilization.

Describe one of your favourite events or one-on-one conversations during WHA, and why?  

The gala evening [Heroines of Health] organized by Women in Global Health in which professionals delivering health services at different levels from specialty hospitals to the primary health care centres were acknowledged, thanked and felicitated.

The session on “accountability” at all levels and through the different stakeholders who are the rights holders and duty bearers. The targeted and transparent delivery of resources and accounting for it is key for efficient and effective service delivery of health services.

In the one-on- one with the fellow Patient Champions we agreed that the political will to reach the last person who needs support for ensuring health is critical and essential. The second is the availability of resources, technical and financial, through the public and private sectors’ participation and contribution was also discussed.

We know this was your first time at WHA. Did anything surprise you?

At WHA for the first time – yes! The availability of snacks and beverages after each event really surprised me, as in other such events these things just vanish.

On a more serious note the partnership of the twelve organizations that are working on the different “accelerators” for the Global Action Plan for Health and Well-being impressed me. The research and development, and the demographic research for the incidence, prevalence and surveillance of diseases as essential accelerators are critical for the Sustainable Development Goal (SDG) 3 and its targets. The accelerator on civil society role and engagement and its discussion and actions will interest me.

What were some of the main recommendations or insights that you provided on panels or discussions?

Wow I spoke from experience…

One of the important highlights was that health is hugely gendered and embedded in the socio-cultural and economic micro –and macrocosms.
Ill health costs livelihoods. This affects the workforce and even causes underemployment among the professional or white-collar workforce.
Non-communicable diseases (NCDs) are mostly not recognised and are a long-term financial burden. There is cause for anxiety and stress related to suffering an NCD because of the longevity in a morbid state and the risk of other comorbidities (NCDs) occurring along the way. Medical insurance does not cover NCDs, the medication, or the disabilities that follow.
There is need for more research on specific NCDs, in addition to the big five diseases. Patient testimonies will be of immense use. Patient empowerment through emotional support, information on holistic health traditions and variety will lessen the morbidity and make them productive.
Women’s health is not only reproductive health. I suspect that the prevalence of NCDs is high among women.
How do you plan to continue or relay these global conversations back home?

The WHA has created a flurry of activities here too, Delhi/India, and we had a youth roundtable on Health, a workshop on SDGs with 200 college students (youth again) as well as a one-day workshop for community health counselors after I returned. And everyone would like a byte and a blog, post event! Phew!

In addition, Nada India has a calendar of events and I am invited to participate and facilitate and contribute. The Young India Network for Good Health is an active network which works at the community level and in the campuses. They are completing a baseline survey on ‘Prevalence of NCDs among alcohol and drug users in Delhi/NCR (National Capital Region)” to understand the need for provision of health education on non-communicable diseases and its risk factors at rehabilitation centres for substances and alcohol dependents.

The members of this group are media savvy and use mass media for messaging on health. This group of young people self-finances their activities of research, awareness raising, community mobilization and action. For them to move to the next level in terms of outreach and engagement with issues and advocacy they need financial and technical support. A very senior journalist blogged about the efforts. I am on call for them as a Resource Person.

What are your top three takeaways from the week?

1. Patient Empowerment and Patient Advocacy
2. Get savvy in the use of social media
3. Partnerships at all levels and geographical spread, to move the SDG 3 agenda and its asks for technical cooperation, effective financial mobilization and Accountability.

Copy rights are with Global Health Council 
Source courtesy:   https://globalhealth.org/patient-champion-spotlight-jyotsna-roy/

I am, a woman, one of the 5 million persons, in India, who are Rheumatoid Arthritis Sufferer- Survivor (RASS)

Nobody dies of Rheumatoid Arthritis but of illnesses that are induced by Rheumatoid Arthritis through the compromised immunity of the body.  

It is a silent non communicable disease not talked about much and not listed as a major NCD.  It mostly afflicts women leading to challenging mental states and responses. 

"... However, even a low prevalence of 0.34% would meanthat India (1.2 billion populations) has probably 5 million patients.... theburden of RA nonetheless is extremely high and needs to be seriously addressedat a national level. " 

I am, a woman, one of the 5 million persons, in India, who are Rheumatoid Arthritis Sufferer- Survivor (RASS).

I had just finished a huge project which contributed to the efficiency of one of the two National duties.  My team and I worked 18 hour days for five straight months. Even while working at the national scale I had a severe attack of Psoriasis on my hands and soles of my feet. The skin on my palms and sole was dry as caked clay and cracked. It was worrying, painful, and cosmetically ‘not nice’.  Once the Psoriasis cleared Rheumatoid Arthritis set in. All joints were affected but the hip joint. I was almost crippled, incapable of the most basic and simple mundane routine activities. I could not lift my head, my eyes hurt, body bloated and mind fogged. It was bewildering for me. 

I think that a  severe deep personal trauma, the long hours of work with indifferent diet and responsibilities were the triggers of the RA that must have been dormant in my system.

Fortunately I had and don’t have diabetes and hypertension in spite of the humongous task just accomplished and my condition. I visited different specialists and had different diagnostics conducted. But the condition kept getting worse. Finally the Senior Consultant of Internal Medicine advised a consultation with the Rheumatologist. Medication, regular follow up and temperature control put me on the path to recovery.  And I was travelling international for work after three months.  I was surprised that not having the courage to even think, leave alone attempt it, I walked up a hill to see the beautiful lake and another one to see a Dzong.  

So nothing is permanent. Everything changes. All we need to do is to be aware, make the effort and ask for help when needed. RA makes one extend the boundaries. Do things that seem impossible at certain times. So, what did I do to manage my condition to turn from sufferer to support provider? I did the following which I shared on Rheumatoid Arthritis Network- India, RAN-I,  FB page.

• Make sure you work to reduce your stress...
• Make sure you do some sort of workout/ exercise...
• Make sure you reduce the 'whites' in your diet....
• White flour sugar, common table salt, sugar, synthetic milk...
• Instead have the greens, yellows, reds and browns
• Nuts and crunchy leaves and seeds
• The spices on your kitchen shelves
• Cinnamon coriander cardamom cumin fennel oregano black pepper curry leaves basil leaves mint leaves...
• Coconut water cucumber juice spinach juice
• Lots of fluids...
• Get fresh air
• Be happy 
• Try to chill even on a bad day
• Watch a movie
• Go out
• Be informed about your treatment and medication
• Talk to your treating physician
• Remember there are more than one systems that can treat RA
• A combination often works.
• Keep warm and dry.
• Switch on the A.C. 30 mins before you hit the bed
• Switch it off when you hit the bed...
• You will wake up with reduced stiffness.
• Plan challenges that will make you work on reducing the pain and discomfort...
• Meditate, walk in nature, make a small garden of few pots, do clay work ...all this will give you positive energy...
• Get up....don't wait for someone to give you the glass of water
• RA can be managed and it will not take over your life.
• To all of you who like this page....
• From a recovered cripple moving beyond boundaries. 
• Much love.

THE OBJECTIVES of RAN-I are to connect for sharing of experiences, asking for suggestions, among those who are suffering, have survived and live with Rheumatoid Arthritis conditions and between RA affected and experts.

Who can join and are invited? Anyone who has the RA condition and or is caring for someone with it, nutrition advisors, skin care advisors, exercise and self management trainers, medical experts from all schools of medicine, mental health experts, and anyone else who empathizes.

This is not supported by any business interests and those with business interests are not welcome.

The reason we build this network is that in India there is no place to share and meet FOR THOSE WHO HAVE THE RA, WHICH IS PART OF an Individual's LIFE ONCE IT VISITS. The morbidity is high but unrecognized.

On February 2 2016, named as world RA day, a What’s App group called Aasha was started and has already a conversation going.

The promoter of this page and site is RA affected, who is making the best of the conditions. In the role of support provider and caring it is a prerequisite that I take care of my physical, emotional, mental and spiritual wellbeing. I am aware of my health, monitor the parameters regularly, aware of my diet, daily morning walk, gentle yoga, daily meditation, interact with friends,  regular work hours, reduced computer gazing and reduced stress and remove stressors. This has reduced morbidity and fogging and makes me available to support others who need only a compassionate ‘ear’,  or some advice for themselves or a parent and share information.
Join our Networks 
Nada India NCD prevention Network
Young India Network for Good Health 
visit www.nadaindia.info 
Mobile 9810594544 

Meaningful involvement of People living With NCDs #PLWNCDs

The Healthy India Alliance (HIA) plans to develop a National Advocacy Agenda of People Living with NCDs based on the inputs of those who took part in the five community conversations (Nada organized one such  Community Conversation among alcohol and drug using population )held in the India. Nada India Team (Ms.Nidhi,Devender Joti peer educator (PLWNCD) ,Pushpa caregiver and Suneel Vatsyayan ) participated and contributed in the Healthy India Alliance Regional Consultancy Meeting for the Northern Region in Delhi on 28th August 2018. Nada India is also part of HIA core group on patient engagement. 

 Nidhi shared her experience and feedback

There's an old conventional way of convening corporate meetings but when we work on fronts of issues related to public at large then engagement of participants in the meeting requires breaking those barriers for formal conversation , cut off the veil and talk about the real things in a realistic way.

Mr.Suneel Vatsyayan has done the same , he shaken the participants in the meeting and tried to bring their attention on the fact that as we have to focus on meaningful engagement of people living with NCDs and it's risk factors like alcohol and drugs to do the same we hv you first meaningfully engage ourself in terms of language , personal real life experiences and real life experiences of people we are talking about.

The body language was intimate and words chosen were close to human beings ,that made most people relate as to talk more openly. 

Kept sticking to and time and again asked others to focus on the topic and reality. 

Perhaps Suneel Vatsyayan Chairperson Nada India was the only one who was more experienced than others in community work.

Very purposefully conveyed his msg. Also shook people to take off mask and talk freely as one time or another we all have to face same difficulties for the purpose we are here for discussions.

 Pushpa both as Nada community worker shared her experience well.

Also as care giver she shared her true feelings. Her wounds are fresh and she needs time to heal. But her spirits are high and ver courageous lady she is.

Devender Joti one of the peer educator of Nada India shared his personal experience and professional experience well in dealing with PLWD and NCDs.

As he has worked in social sector that is unorganized work sector ,he has worked in a free environment with less obligations to adhere to certain way of work and that is good also as we are not in any race for perfection and one should not be.

Its good we as People Living with NCDs got opportunity to express ourselves freely and also hv choice for work. Nidhi Nada India Team.

MEANINGFULLY INVOLVING

PEOPLE LIVING WITH NCDs

What is being done and why it matters

https://ncdalliance.org/sites/default...

DIABETES CHANGED MY LIFE... Nada India Health Advocate

Nitish Rai was 

awarded for his voluntary  contribution in 2017

HOW BEING DIAGNOSED WITH DIABETES CHANGED MY LIFE

Nitish Rai is a Nada India Good Health 

Advocate. 

Hi Friends,
I am Nitish Rai I was diagnosed with Type 1 diabetes 20 years ago, when I was 4 years old.  Type 1 diabetes is an invisible disease. To look at me you wouldn’t know there was anything wrong. But living with the condition is a 24/7 thing. It has completely changed my life and, in different ways, affects every aspect of what I do. 

Eating and exercise can be tricky
Every time I eat, I need to think about how it is going to affect my sugar levels. As I have Type 1 diabetes, my pancreas cannot produce insulin and I need to inject myself with the hormone, usually five times daily, and attempt to replicate the work of the organ. 
Carbohydrates increase my blood sugar level, so every snack and meal is a maths challenge, requiring me to calculate how much insulin I need to inject to counteract the spike in my blood sugars. 

I love running and going to the gym,playing cricket, but this also affects my diabetes as too much exercise can make my blood sugar levels go dangerously low, while certain types can cause them to spike too high. 

I constantly need to check my sugars and adjust my insulin intake – no two days are the same! Exercise is good for me but it's certainly not a simple and straightforward endeavour. 
I have to constantly tell people that I didn’t get diabetes from eating sugar

Diabetes has a bad reputation and it is often the subject of jokes.

 I have found that most people don’t understand the difference between Type 1 and Type 2 diabetes. I have Type 1 diabetes, which accounts for about 10 per cent of cases. No one knows exactly what causes it, but it’s not to do with being overweight and it isn’t currently preventable.  

People with Type 2 diabetes don’t produce enough insulin or the insulin they produce doesn’t work properly (known as insulin resistance) -  90 per cent of people with the condition have this form. They have developed the condition because of their family history, age, weight or ethnic background which puts them at increased risk. It starts gradually, usually later in life, and it can be years before they realize they have it. 

Living with diabetes day to day often causes a lot of feelings of guilt because when my blood sugar levels don’t do what they should do, it often leaves me feeling that it is my fault. What did I do or eat to make that happen? I wish people knew that even when you do everything right with diabetes, it can still go wrong and it doesn’t help when society often portrays the condition as something you brought on yourself and should feel guilty about. 
I never stop thinking about my diabetes
Diabetes is a complex health condition. Unfortunately, once you are diagnosed you can’t just be sent home from hospital with a straightforward prescription for medication to take every day for the rest of your life. Insulin is not a cure for diabetes - it’s just a treatment and I need to work really hard to make it work. So many little things affect my blood sugar levels, from exercise to stress to the temperature outside! If I don’t keep my diabetes under control and blood sugar levels within the recommended range then there is a high risk of developing some dangerous complications, including stroke, kidney disease and even amputation. 
I think about my diabetes all day long – even when I go to bed and try to switch off after a long day, I am worrying that my blood sugar levels could drop unexpectedly. It’s never ending with diabetes - you don’t get a day off and there are days when it’s the last thing I feel like dealing with, but I don't have a choice. It’s hard to be spontaneous when you are a Type 1, as you always need to think about how what you are doing will impact your diabetes.
But I still do the things I love
Although my diabetes is a large part of who I am, with the right understanding, education and medication, I can take control of my condition and still live the life that I choose. I was able to go onto a diabetes education course a few years ago, provided by the AIIMS, which really helped me to better understand how to manage my diabetes day to day. 
I found it invaluable and would encourage anyone else with the condition to find out more by asking their doctor or nurse. Along with raising awareness about how useful the courses are the charity wants to make sure they are available to everyone with diabetes across the India. Currently they are not. That is something that has to change.

These days, I am able to control my diabetes so it doesn’t control me.

 I can do any what which I want and eat the foods that I like. I am able to run and I am planning to play a cricket tournament. Having diabetes can be complicated but with the right support and understanding it doesn’t need to stop you from doing the things you love!

Youth Leaders @ Second Global NCD Alliance Forum called on CSO and government to step up the pace on NCDs.

Nada India at the Second Global NCD Alliance Forum (7-11 December 2017)

On December 7-11, Nada India’s youth advocate Vindhya was at the pre forum youth workshop and the second Global NCD Alliance Forum in Sharjah, United Arab Emirates!

The second Global NCD Alliance Forum was organized by the NCD Alliance (NCDA) in partnership with local host organization, Friends of Cancer Patients (FoCP). 350 members of the NCD movement from 68 countries attended the Forum from 9 – 11 December in Sharjah, United Arab Emirates. This year, an increased number of youth delegates and people living with NCDs participated in this unique event, which reflected the Forum’s objective to promote the engagement of the next generation and people living with NCDs as central parts of the NCD movement.

Vindhya was among the 22 youth delegates who called on their peers, CSO and government to step up the pace on NCDs. The enthusiasm and engagement of 22 youth delegates was reflected in the Youth Call to Action produced at the Forum, as a time-bound and measurable agenda for the next generation in the lead up to the 2018 UN High-Level Meeting on NCDs.

Global NCD Alliance Forum: Pre Forum Youth Workshop

Experiences shared, lessons learnt, and solutions discussed

The pre Forum Youth workshop developed a network of youth advocates focused on the non- communicable disease global agenda in the lead up to the UN High Level Meeting on NCDs in 2018

The focus was on how to engage the right people at the right time; i.e. mapping the key stakeholders, setting up the priorities and the importance and impact of these key priorities. The youth advocates were exposed to some excellent examples of successful stakeholder engagement and how it made an impact at local, national and global levels.

The key stakeholders identified by the youth advocates involved The Ministry of health, finance, social justice, youth, PLWNCDs, caregivers, WHO, private sector, pharmaceutical companies, Hospitals, NGOs...the list is endless but the one who can influence and is interested will lead. And what are the priorities for NCDs? Finance, awareness, access to health care, risk factors and youth behavior, prevention, youth participation, PLWNCDs and the commercial determinants of health.

The participation of youth and people living with NCDs is extremely important at all levels; we learnt how to develop a comprehensive agenda for young advocates using an integrated and inclusive approach keeping in mind that we need room for all, health for all.

“Jack Fischer from NCD Free told us why is it important to have a story to tell while pitching in for an idea. It is easier to connect when you have a real story equipped with facts to tell. There are more chances that the other person will actually listen to you when you can strike a connection. Find your story (could be yours, of a family member, friend or anyone who you know), equip it with facts and present it with your idea to bring in a social change in no more than 60 seconds. Always remember that the busy world doesn't have more than 60 seconds to listen to you and your story. So go and find your story to change the world.”- Vindhya, Youth Advocate, Nada India

Vindhya on behalf of Nada India also set up some commitments for #India at the Forum:

·         To mobilize youth in NCD response.

·         To promote the engagement and meaning involvement of people living with NCDs.

·         To mobilize and strengthen the civil society on my country.

Key highlights from the Pre Forum Youth Workshop

Priorities for “Youth”

·         Throughout the development of the health related frameworks, young people should be at the forefront in advocating for priorities to improve health and wellbeing.

·         Youth voices can put pressure on decision-makers to recognize and include issues that are often side lined, particularly related to alcohol and substance abuse.

·         Young people can develop grassroots campaigns on the prevention and management of alcoholism and should advocate for policy-level changes.

·         Many of these young people are researchers helping to generate evidence being used to support these changes.

·         As young people, they bring unique experiences and perspectives to health agendas and have a right to negotiate the future health of the communities in which we live.

·         Ahead of next year’s high level meeting, advocates must ensure that the priorities of young people are heard and acted upon at every level and that governments are held accountable to their health commitments.

·         Ensure universal and equitable access to high-quality, affordable, age-appropriate health care.

·         Scale up financing and resources for prevention, management, and treatment of NCDs across the life-course.

·         Raise awareness of children, adolescents, and young people, and sensitize government officials about the risk factors, prevalence, and impact of alcohol as one of the major risk factors.

Agenda Action for Youth

·         Advocacy for the prevention and control of alcoholism and drug abuse needs substantial input from youth as drivers of the next generation of innovative solutions and action for health.

·         Deliver youth-generated messages on awareness and advocacy priorities via social media, blogs, and other communication channels.

·         Measuring progress is essential to ensuring these steps achieve their intended results. We commit to monitoring delivery against these actions, as well as celebrating and learning from successes, and identifying further opportunities to sustain momentum towards next year’s meeting.

“We urge you to continue the conversations you started here. Continue communicating with partners – both old and new. Continue listening to and engaging the voices of the next generation. Continue agitating for change…for health equity…for the sake of every person living with or at risk of NCDs…for the sake of us all. – “Katie Dain, CEO, NCD Alliance