Support Sickle Cell Anemia Patient in Maharashtra

"Subham Karoti Kalyanam Arogyam Dhana Sampadah
Shatru Buddhi Vinashaya Deepa Jyoti Namostute

"I fold my hands before the light that brings prosperity, auspiciousness, good health, abundance of wealth and destruction of the enemy's intellect". Here, Darkness symbolizes enemy's intellect and with the arrival of light, darkness disappears. Likewise, light (God's Grace) destroys darkness (enemy's intellect).

"Deepajyothi Parabrahma Deepajyothi Janardhana
Deepo Me Hara Tu Paapam Sandhya Deepa Namostute"

"I fold my hands before the lord, the maintainer of this creation, in the form of this light. I adore this light, which destroys all the pains resulting from my omissions and commissions".

On this auspicious festival of lights ‘Diwali’ … I am glad to write about sickle cell fighters as we at Maharashtra Arogya Mandal always find them inspirational.

Maharashtra Arogya Mandal has always thought about sickle cell community very proactively.

Sickle cell community is dynamically diverse in terms of their socio- economical background, health status, access to resources and their needs from healthcare sector.

Patients are aware about their dependency of health status on variables like climatic changes, nutrition, medicine, intensive care and sometimes timely surgical interventions. They make difficult choices like to select recurrent blood transfusions, painkillers or surgery… sometimes this choice comes to who and how many family members or children as well. Every family has more than 3-4 patients where head considers his responsibility to take decisions for equal opportunity of care for all his dependent members.

This Pre Diwali-screening camp in end of September we treated more than 1144 old patients and screened 299 patients with normal trait 76 and carrier 112 and disease patients 111. All these patients came along with their un-screened family members so that they also get to know their status of disease.

Now patients understand that if they get screened there is a chance of better healthcare for better future ..better quality of life.

One of the patient said.."This screening test and introduction to our centre is his Diwali gift for his relative staying far away from the healthcare access".

In all these odds and uncertainty around He was positive, hopeful and making others ready for better life ahead. All these patients are guided by the light within.

They never appear sad, they never give up.. they are with hope … they are thankful and happy for the life they got. Sickle Cell Patients … sufferers or carriers …are not just suffering with disease but they are the best example of living life to the fullest with in depth gratitude towards each moment they get .. they are indeed thankful to donors who gave them reason to smile on this Diwali.

Maharashtra Arogya Mandal appreciates all the efforts of our donors to help us light a lamp in the lives of sickle cell anaemia patients.

Keep spreading the light. May you all be blessed with health, prosperity and joy on this Diwali.

Namaste.

Links:

• Maharashtra Arogya Mandal Website

A freshly passed out post graduated doctor Dr Vishal (name changed on request) visiting our outreach center in Dhadgaon was enthusiastic to be part of this initiative for the first time...however once we reached the center he was saddened to see deeply worried faces of Sickle Cell Disease Patients. He wanted to help but wasn’t sure how and when? Is there any medicine for happiness especially for those suffering with genetic diseases with a destiny of pain and worries? This question from his first visit was genuine and took us to need of genetic counselling, emotional support with preventive and therapeutic management for sickling crisis like conditions.

His emotional turbulence; with empathy, willingness and curiosity ‘to explore a HAPPINESS pill for Sickle Cell Patients’ was so evident that lead to a quest on “How a doctor/volunteer/donor /government agencies serve SCD patients better … not only for their bodily sufferings but also for mental agony.”

The Sickle Cell disease is making itself ‘marked’ in metro cities like Pune or Mumbai. This increasing number could be a result of migration from rural to urban areas and sometimes inter caste marriages or lack of pre-marital counselling.

New doctors like Vishal need to understand the changing book picture of community medicine statistics and presentation of the disease. How to identify Sickle Cell Patients, how to work on validating our theoretical knowledge and how to manage the patients with limited resources could be a challenge in front of future doctors as well.

Chronic illness is a daily reminder of struggle, which seems unending. Sickle Cell Patients live with this identity of sufferer or carrier of the disease throughout their limited painful lifespan. Understanding disease by all stakeholders is first step to treatment however understanding the mindset and psychology of patients suffering with genetic disease always remains a road less travelled by doctors.

As someone who lives with a rare disease, people often have a very different perception of how a patient think, feel, and live each day of  his/her life. “While I have an illness, I am NOT my illness. It is merely a part of me.” Kind of Psychology needs a big boost. This can only happen when doctors are aware about patient’s pathophysiology as well as psychology.

After the camp activities our team always illustrates and train new enthusiastic doctors like Vishal on following three actions points

1. How mental health support and genetic counselling is important to patients living with Sickle Cell Anemia. As the likely increases in availability of DNA based tests and demand by patients for genetic information and advice mean that primary care practitioners will need to become genetically literate.    [*North West England Faculty of the RCGP.Genetics in primary care. A report from the faculty genetics group. London: Royal College of General Practitioners,1998 (Occasional Paper 77).Google Scholar **Andrews LB, Fullarton JE, Holtzman NA, Motulsky AG.Assessing genetic risks: implications for health and social policy.Washington, DC: National Academy Press,1994.Google Scholar]
2. Genetic medicine is already beginning to enter the realms of primary care through the availability of testing for predisposition to certain cancers and carrier screening and diagnostic tests for common recessive disorders such as cystic fibrosis and hereditary haemochromatosis. For the near future these issues will probably remain the focus of genetic medicine in primary care, but this could shift if pharmacogenetics research fulfils even some of its early promises.
3. Mental Health Support for Sickle Cell Patients is need of an hour. This can be done with Genetic Counselling as well as ‘Living with Disease’ Counselling. We can bring a smile on patients’ faces with making them equipped with hope, courage and approachable treatment facilities.

It’s aptly said that “Nothing is more beautiful than a real smile that has struggled through tears.”

Out genetic counselors work as members of a healthcare team, providing risk assessment, education and support to individuals and families at risk for, or diagnosed with Sickle Cell Anemia.

We held Sickle cell camp on 29^th July 2019 with 62 new patients- AA ( normal) – 21;AS ( Carrier) – 28; SS ( Sufferer )- 13 along with free medicine distribution to 580 old patients.

At Maharashtra Arogya Mandal we try to make every day in the lives of sickle cell patients less painful and more joyous with such little attempts to give them little sunshine of happiness. .“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’” This quote from Mary Anne Radmacher illustrates our untiring effort.

Organizations like Maharashtra Arogya Mandal need new socially oriented, technologically sound and empathetic doctors but these new generation of doctors need your support..and resources to keep going.

 Until next time..keep spreading happiness !

Links:

• Maharashtra Arogya Mandal Website

• Role of Doctors. (PDF)