NHFDC : A helping hand to persons with disability

A ray of light is enough to annihilate the darkness. Sun rises after sunset.

Similarly NHFDC is a light of hope for  PWD (Persons with disability)

If you have will, courage, enthusiasm- thousand of government and non government organisation
come forward to help you.

Let us  know about NHFDC , grab the opportunity and annihilate the darkness..

National Handicapped Finance and Development Corporation is  basically a unit of Govt. of India
undertaking which work for the welfare of disability community. They have different kinds of facilities which we can clinch .But , to avail these ,you must have disability certificate and we have already discussed  how t obtain it in  the previous article

NHFDC basically work through SCAs and Public sector banks. you can get the address of SCAs from the website of NHFDC.

SCAs -State Channel Agency

Look at the insight toNHFDC

1.We can get loan of up to  Rupees 25 lakhs to set up of small-scale  industry and many different types of schemes which we could apply ,like agriculture loan ,vehicle loan etc.

2 .Loan for education and training.

To meet the tuition fees and other accessory for pursing education .

3.Scholar scheme for – 2500 disabled youth.

Any graduate and post graduate student can apply for scholarship during the academic year.
This scheme envisages encouraging differently-abled students by providing scholarships and other
assistance to pursue professional or technical courses and various skill development courses for
their empowerment.

4.Scheme for disabled young professional.

This scheme is for professionally educated unemployed disabled youth. In order to inculcate the
spirit of self-confidence among such disabled youth through self employment and utilise their
wisdom & experience gained through professional training & education, the Corporation provide
loan at the rate of 4-8% p.a. to professionally educated / trained disabled youths.

5.Scheme for financial development for  Skill Development and Entrepreneurship.

The objective of the scheme is to provide training to disabled persons to make them capable and
self-dependent through proper technical training in the field of traditional and technical occupations
and entrepreneurship.

And there are various different type of schemes  available ,which is really beneficial for disabled
person. but to grab any opportunity you must have a minimum of 40% disability and certificate showing the same.

For  more terms and conditions, please visit the website of nhfdc.

http://www.nhfdc.nic.in/schemes.

The objective behind this article is only to make  the PwHs  aware of NHFDC. author and team RedLegacy  have never taken any benefits from NHFDC.
Thanks and regards

Chandan kumar

RedLegacy

HEMO ANGELS: A series on Doctors, Researchers, Paramedics, Volunteers who contributed a  huge part of their lives to better the lives of Persons with Hemophilia and other bleeding disorders.

Dr. Savita Rangarajan - Changing lives of Haemophiliacs

An Indian doctor based in London, internationally known for her contribution in the field of haemophilia, haemostasis and thrombosis. .Though based in UK now, she continues to be an Indian at heart and wanted to provide better care for PwHs of India. This led  her to start Prerana Healthcare Foundation on 10th October 2014 and set up the first Comprehensive Centre for Hemophilia Care in Mumbai , India, on 3rd March 2015.

Dr. Rangarajan believes that research always improves clinical careas it forces clinicians to think.Hence ,the two go hand in hand and thereby raises the bar of clinical care.

Career 

Dr.Rangarajan started her career as a haemophilia consultant at St.Thomas' Hospital, London, in 2000.
She joined Hampshire Hospitals NHS Foundation Trust in 2008 and led the haemophilia,haemostasis and thrombosis service and built the Southern Haemophilia Network.

Achievements

She is the Director of the Southern Haemophilia Network
She is a nominee to the World Federation of Hemophilia Board

Led in the twinning of the Haemophilia,haemostasis and thrombosis Centre in Basingstoke and the Khartoum Haemophilia Clinic in Sudan.

Leading a twinning programme with  B J Medical College and Sasson Hospitals ,Pune,India.

Areas of Interest

Dr. Rangarajan's main area of interest is to develop cost effective treatment to people with bleeding and thrombotic disorders.She has been working on the management of complex patients with inhibitors.

She is the principal investigator for many clinical trials  in haemostasis and thrombosis including Gene therapy  and has published many studies.

Hobbies and Interests

Dr Rangarajan is trained in Carnatic music and Veena and enjoys playing it.
She is a keen gardener and cook.

Prerana Healthcare Foundation

Prerana was formed to provide Comprehensive health Care to persons with hemophilia and other bleeding disorders and thus improve their quality of life.They also create awareness  among the hemophilia community and the general public.Prerana Foundation provides training to health professionals in hemophilia care and partners in research to help better the treatment of bleeding and thrombotic disorders.

https://www.researchgate.net/profile/Savita_Rangarajan

Compiled by : Hemant Naidu Pulijala, Dr.Anupama Pattiyeri
                          Team RedLegacy

Know Your Mind, Body and Soul !

We undergo different ups and downs in life, frequent bleeds, infusions, hospitalizations, pain and sleep deprivation, continuous absence at school and workplace... all these are not uncommon in our lives. We, the Hemophilia family- persons with Hemophilia, caregivers and carriers often are in severe emotional and Psychological stress. And this can again affect our health. A way to de-stress and fill your life with energy and positivity, which helps us face the challenges of life with more courage, will help us a lot.

Yoga is a life of self discipline.

Yoga balances,harmonizes,purifies and strengthens the body,mind and soul. It shows the way to perfect health,perfect mind control and perfect peace with ones own self,the world,nature and God.

Serve,Love,Give,Purify,Meditate ,Realize !! 

Yoga for a healthy life.  

Dear Yoga seekers, OM !!

Welcome to the world of good health, success, well being and fortunes, which

will evolve joy & bliss which is the other name for ‘God’. This is what Yoga is all about.

Yoga is a way of life & enables us to have

multidimensional approach to life. A healthy body therefore may be called as the foundation

of yoga. If there is a key to life, it is Yoga. Regular practice of yoga, is a power, which you have

to top and become the master of yourself & the world. The greatest power and energy is

within you. Yoga is fully capable of giving the humanity physical and mental health.

Yoga is the only exercise, which affects the inmost parts of the body. If the organs

inside the body are active and has adequate resistance power, then the medicine also acts,

otherwise the medicine leaves behind toxic effects and gives rise to many new diseases and

side effects. This inner strength of the body is gained by the practice of Yoga.

Thinking becomes positive and constructive, no matter what our field of

activity is, by the constant practice of yoga we remain in the state of yoga.

Pranayama



Pranayama is the practice of breathing. But prana is not only the air, it is the vital energy in

the air.In other word “expansion of prana”. The aim of pranayama is to inspire, infuse,

control, regulate and balance the Prana Shakti (vital energy) in the body.It purifies the

mind and it helps to improve retention power and concentration power. All the organs,

veins and the entire nervous system gets strengthened by the regular practice of

pranayama.It washes away the impurities and leads to the light of real knowledge.


Below are some of the breathing practices with can be practiced by all of you -

1) Ujjayee pranayama

  2) Bhramari pranayama

         3) Nadi shuddhi pranayama

4) Sheetali pranayama

Please practice the above under the guidance of a good yoga instructor.

Meditation



There are different ways to get to Meditation. It depends on the individual and the way

of practice.

For example -

1) Loud chanting can lead to meditation

2) Chanting in your mind can lead to meditation

3) Repetition of a mantra with the help of a japa mala

4) Concentrating on one particular object

5) Listening to some audible meditation instructions will help you to meditate better

Meditation is not an achievement, it's just a matter of you being peaceful with yourself for

a few minutes and you can find meditation in whatever makes you happy.





- Priti Prabhu
       -Siddhaartha Ojha

Wanna know how Hemophilia Societies and volunteers work? Come, have a sneak peek!

Hemophilia Societies and volunteers: How they change the plight of Hemophiliacs !

Why do we need Hemophilia Societies and volunteers   ? Hemophilia is a blood coagulation disorder. Though it sounds simple when we look at that one liner, Hemophilia is a congenital chronic lifelong process which brings with it a host of issues - physical, emotional, spiritual, social, financial, vocational and much more.

The Hemophilia Societies around the globe, they understand the problems and find solutions for the same. They deal with the different issues faced, be it helping PwHs at times of emergency, providing medical assistance, lobbying with the Governments to make policies beneficial to hemophiliacs, provide counseling, devise projects / schemes that help in the economic Rehabilitation of PwHs, create awareness and much more

And how do they work?  They do so with the help of volunteers. How can the volunteers help?

The volunteers include people with Hemophilia and their families, Doctors, Physiotherapists, Social workers and any one who is happy to spend their time and utilitize the resources to better the quality of lives of Hemophiliacs.

The Hemophilia Societies and volunteers do the following.

Awareness: Hemophilia is a rare disorder and hence not many  know about it. The Societies create awareness among the public about it. This will help in identifying more people with Hemophilia and other bleeding disorders and also help in finding volunteers.This also helps in garnering support of the society.

Medical guidance and medical camps: Where to diagnose, how to identify early bleeds and manage them, the do' s and don'ts in hemophilia...guidance regarding all these are provided by the Societies and volunteers. They also conduct camps to assess the medical, Orthopedic, Dental status and advice proper management. They organize  CMEs to keep the medical Fraternity updated about Hemophilia care.

Counseling and Psychosocial support:When a person is diagnosed with Hemophilia, the whole family will be anxious, stressed and in grief. They should be reassured that Hemophilia is quite manageable. Also, effective counseling is needed to tide over crisis situations. The team also provide emotional support and also guide in adopting a healthy lifestyle and to choose suitable academic and career options.
They also refer the ones in need to psychologists /psychiatrists.Legal guidance is also provided.

Medical and financial assistance: The Societies help the PwHs it difficult times and provide factor and financial assistance with the help of sponsors.
The sight of pain and suffering is very disturbing, but the sight of happy smiles when they get help during the crisis, get a person to speak to, a shoulder to rest on can only be felt and not expressed in words. You can be a volunteer too. You can contact the Hemophilia Society nearest to you and help them as per your skills and knowledge. 

You can find the contact list of Hemophilia Society Chapters of India in this links.

1- http://www.hemophilia.in/index.php/our-chapters/northern-region

2 -http://www.hemophilia.in/index.php/our-chapters/eastern-region

3 -http://www.hemophilia.in/index.php/our-chapters/western-region

4- http://www.hemophilia.in/index.php/our-chapters/southern-region

You can also volunteer through Prerana Health Care Foundation, an organization aimed at providing comprehensive health care to Persons with Hemophilia and other inherited bleeding disorders. Contact : +912224025041

---- Dr.Anupama Pattiyeri

     &Team RedLegacy !

     

   

HEMO LEADER : A series on the leaders of the Hemophilia community whose undying efforts to better the lives of PwHs is an example and inspiration to others

Together with you until my heart stops beating : 
Sonal P Sakariya, Chose her sweetheart,Chose Hemophilia!

Dear Reader,

Do not know how to  write  a story ?  A 19 year old  young  girl , pampered in family as she is the  only girl child  in a large  joint family transformed to a strong lady who fights against all odds of health , society and finance by a Midas touch of her first love . Yes  I am sonal .. Mrs. sonal sakariya , a wife  of PWH and caregiver ,volunteer for  haemophilia care .
 When I finished the schooling and started college I lost  my first heartbeat  to see  Paresh .. and from  that day I had not any beat without Paresh .  Paresh clarified me that he is PWH in our  first meeting  .I was not able to decide and was confused at the tender age of 19 yrs .. I thought that I  must dedicate my  self for my  first love .
WE do not belong to same caste, we do not have graduation   and there are many differences in our families traditions.  My family tried to counsel  me  , I replied that if some thing happens to me after marriage or if I marry a normal person and some aliments develops  to him what u will do ? I decided to marry  him and do not disclose his PWH status to my family, As a only girl child my parents and family respected my love and feeling and one fine morning we got married though belonging to different castes  has a great  social impact  before 25 yrs   . I married  “ haemophilia “  the same day . I started working for the cause .. I am proud and happy that since 5 yrs I am secretary of the society and Women's Group  Co-ordinator. I advise all that there are ups and down in everybody's  life .
Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
I suggest all  PWHs , their wives  and everybody “ that accept and love  a person in totality not his good things only “
“There are some people who live in a dream world, and there are some who face  REALITY   AND MAKE DREAM TRUE “
 A journey of struggle started..  as it was a love marriage and not happily accepted by both the families we decided  to stand on our own , Paresh started a small industry of diamond cutting tools and I started helping him.
 I always advise the family, particularly women ( Wives, sisters ) to involve in the care of deficiency ..Accept the reality and challenge the reality   to transform it to well being .

                     My loving family

                                                               
Working for  the cause since long had given me opportunity  to get exposure to different kind of personality , thinking and learning , at the same time  helped me  realize my limitations  and upgrade my self  and expand the boundaries of limitations .. I wish to tell all ladies  that start working for the chapter.   You may face criticisms  , u may be involved in controversy but continue working as there is a saying that “ when you wear   a shoe , It may bite u “ but find the solutions of such “Bites” keeping all together.
I know  that every lady has the constraints of family , society, finance and many more ,but  I suggest all that please be strong , committed and focused to the gall ..Never waste your energy in small issues..
My involvement with chapter and   Women's group  had polished me in many ways and widened  my thinking towards PWH , Society and HFI .I came to learn and understand the issues of women  at different stages . I still remember the  day one of “ Trainers Training “ at Delhi and Sonal is trying to  change  from that day .This is the  impact of training Workshop in my life and I tried to share the same in Women's Group of my region

 The opinion which other people have of you is their problem, not yours.  Remember this  and dedicate your self for the  community .
At a chapter  or regional level  I had tried to give my best to lady members . PWH and CWH..I personaly feel that change should start from grass root level and reach on the top . we have many ladies with bleeding disorder , carriers , wives and mothers  expecting our support  ,who may be from remote village to cities
  We had started a small scale economical rehabilitation  project since 2002 and we are regularly upgrading it according to the  market needs .This projects may not earn huge amount of money , but give self confidence , and self sustainability to Women's Group .
We at chapter level always try to live   as a  family   and so mostly we celebrate all the occasions together .of course, not only celebration but in case of need of any PWH we remain together .. It is not “I” bet “WE”
The working for the cause  voluntarily  had made a drastic change and miracle in my life .. 3 yrs back Paresh  had abdominal bleed , on hospitalization doctor realized  that he is having lung bleed also and he was going into shock .. after primary treatment  on screening we realized that he developed  Inhibitors  .. 62 days of Critical care unit stay with tracheotomy  ,a black night started ..Every morning was coming with a new complication may be renal, oral bleed and last CNS bleed . It was very difficult to treat   him on available  medical infrastructure of the city .
A ray of sun came after 64 days stay CCU with the help , support and prayers  of all well wishers , HFI , HFI EC , family , doctors and of course team Rajkot ..  I am thankful and appreciate the efforts, prayers , wishes  of each every  body nationally and internationally  and of course I appreciate team Rajkot for constantly supporting me  to procure, manage,all medical, financial hurdles and managing 95,000   IU FIEBA AND NOVOSEVEN .
.. What a great gift given to me by Almighty God  and all haemophiliac community  !!!! I had decided to dedicate more religiously than .

 Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.

I personally  enjoy working for the cause and  I feel  this is  my only hobby or u can say passion

             MY EXTENDED  FAMILY


 Advantages of Women's Group 

 Initiitiative
Responsibility
Ownership
Capacity Building
Self confidence & self esteem
Mutual help
Access to larger pool of resources
Channel of functioning

ISSUES AND LIMITATIONS of a lady :
The common Issues   which interfere in momentum of the WG are
            (1)  Language barrier
            (2)  Communication

Dedication  to the cause  varies individually .

Family Responsibilities .
Education.
No self Confidence.
Social   stigma  about particular deficiency.
Safety, security.
Social opinion also plays a major role.

Finally   wishing   all members   of our community happy, healthy life and bright future  !!

How to get PwH's a disability certificate !

Disabilty and Hemophilia 

The repeated bleeds into joints, bones muscles may lead to synovitis , arthritis and permanent joint deformities and the bleeds itself along with disuse because of pain can lead to wasting and atrophy of muscles. Yes, if adequate treatment is not available, Hemophilia can lead to disabilities.People with disabilities,also known as  "differently abled" in our society,can be categorised into physically disabled and mentally disabled . Hemophilia is not a disability by itself, but can cause disability as a sequelae to bleeds  depending on the site of bleed.Mostly, Hemophilia leads to Physical or orthopedic disability. 

We shall discuss about Physical Disability here. 

 The very word 'Disability' is not a very welcome one ,and many of us may hesitate to get ourselves tagged "disabled" or "handicapped" . We are lie every other humans and much stronger emotionally and mentally and have a greater endurance to pain . The disabilities and pains lead to a lot of sress ,and when this happens,we feel disdain in ourselves.

But I want to tell only this to all the PwHs who has joint deformity and that is,  you are not the only one with such difficulties in India  or all  over the world  and there is nothing wrong to get disability benefit in Government  sector jobs, in school or college seat reservation or whatever the benefit we can get  like scholarships, loans and much more.

For this we have to get disability certificate and it is  our constitutional right, no one can refuse us from getting the same. These days I got many query calls regarding disability certificate. Many also complain that doctor's refused to give certificate  stating that Haemophilia don’t come under disability.

Yes , according to  the Disability Act of1995, hemophilia is not covered under disability, but if anyone gets muscular weakness, joint restriction due to any reason, they have right to get disability benefit.

Now, the  question is, how to get disability certificate

There is mainly two ways to clinch disability certificate.

1.Through State Channel Agency.
2 Through.Vocational Rehabilitation Centre, Govt. of India.

1. State Channel Agency (SCA)

Every state have their own rule to produce disability certificate. But ,in most ,Civil hospitals of the  state are bound to give disability certificate. According to Disability Act 1995,a  panel of a minimum of 3 doctors should be present in  the board who examines and assess  the  percentage of disability and the certificate is to be countersigned by either the Head of the  Hospital or Civil surgeon of the concerned district.

So  PwHs, please consult the nearest  State Government Hospital and  present your application to obtain disabitity certificate to the concerned officer. They will  give you a date of the upcoming board and you should be present there at the given date with all your documents i.e., haemophilia diagnosis report , Radiograph  of arthritic joint etc.
If they refuse to give, you should  convince them,you may show a copy of the  1995 Disability Act. In many cases doctor are stubborn. So we can also follow other path.

You may go to a Physical Medicine and Rehabilitation (PMR) specialist of the State Government. They too are authorized  to issue the medical certificate. When a member of the  medical board find it difficult to assess,they may refer to you  PMR specialist to know the  percentageof disability. You may consult them straight away too.

2. Vocational Rehabilitation Centre.

Government of India have 20 vocational rehabilitation centers for the  disabled across india.
They provide  various skill- based training to handicapped people and are also authorised to issue handicapped certificate.
You may contact them too. They shall then  refer you to their concerned  doctor for examination of disability and there  after they issue certificate and handicapped identity card. You can get different type of skill training also.
Please open following link for the address .
http://ayjnihh.nic.in/awareness/employment3.asp

Please note minimum 40% disability is essential for  reservation, relaxation or any benefit.
The benchmark is 40%...

This is a guide on how to get a Disability Certificate.Every curse can be made a boon.Wait for more info on  the different beneficial schemes for  persons with disabilities and how to avail them.

Do not hesitate,if you have a deformity,do obtain  a Disability Certificate.

Chandan Kumar and Team RedLegacy