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

The journey of a female bleeder : From Daddy's little princess to International Ambassador - Story of Nabila Hussenii

I have Factor V Deficiency, which is also known as Para hemophilia, a rare
bleeding disorder. Over the past 50 years, most of the world has focused on
discussions and research concerning boys with Hemophilia. However, we
know now that girls also need to be tested for bleeding disorders, and in India,
there are many people with rare bleeding disorders.

I have a clear mission – to find women who suffer from bleeding disorders and
to help them deal with various aspects of their lives. This way, they will be
able to overcome whatever challenges they may encounter. I have witnessed
how my parents faced many difficulties as I was growing up without access to
proper treatment.

When I was 8 months old, I accidentally fell off the bed, which resulted in a cut
on my lower lip that kept bleeding profusely. At the time, doctors were not
aware about Hemophilia and its treatment. When my bleeding did not stop, I was
brought to the King Edward Memorial (KEM) Hospital in Mumbai.

I did not have a normal childhood when I was growing up. I was not allowed to
play outdoors with my friends. When I was 4 and half years old, I fell down
from the stairs and suffered a brain bleed. I was on the verge of death.
Doctors in my city refused to handle my case and again, I was taken to the
KEM Hospital in Mumbai. The brain bleed not only caused me to have
seizures, I started to stammer when I spoke. I was then referred to a
neurologist and had to take medication for the next six years.

Over the years, I suffered different types of bleeds, ranging from excessive
and painful menses caused by an ovarian cyst, to getting fractures and
spontaneous bleeds in both my knees. Being a female “bleeder”, I face
different physical and personal issues compared to male hemophiliacs. Yet,
these challenges have not stopped me from living my life to the fullest.

I was once the girl who was not allowed to travel unaccompanied. But in the
past few years, my parents realized that I had gained confidence after
attending women’s workshops, and I finally went on my first overseas trip
alone to the Philippines, where I gained exposure to the work done there with
hemophilia patients.

I graduated with a Bachelor’s degree in Commerce and another Bachelor’s
degree in Education for Teaching. I have also received diploma certificates in
computer applications. Previously, I worked as a teacher for five years at a
renowned school in my city. I am currently working at an IT firm as a Quality
Assurance Officer and Content Writer.

In my spare time, I volunteer as a communications specialist and women’s
group coordinator for the Hemophilia Federation (India). More recently, I was
named as one of the ambassadors of MyGirlsBlood, an international network
of women with bleeding disorders. My hope for the future is to be an example
to other women hemophiliacs, and to strive and help others.

Getting ready for the battle field... A planned approach after Tenth standard for PwHs

Heartiest Congratulations to all the PwHs who passed Senior Secondary Examinations this year.Almost all the State Boards and CBSE have published their results.    This is time for celebration and we hope that all of you enjoy with full ebullient. Whatever the marks you secured,it  is a great example for others, because you achieved it amid bleeding episodes, severe pain and a lot of mental stress. We better understand this because we have already gone through this. I know that even amidst celebration, you all are worried about your future too. Millions of questions, doubts will be going through your minds now. What are the courses best for me?  Where should I be heading? You might be in confusion, what to choose?? Mathematics or Biology?? Commerce or Arts??

You all will be having  ambitions. Many might be aspiring to be a doctor, engineer,CA,economist, Mass communication expert and so on. Though you are totally confused about what to choose from the wide list of options, you all will be very excited too. Teens are highly enthusiastic, ambitious, motivated and ready to take up any type of pressure to fulfill their career ambitions. At the same time, you may connect your ambitions to Hemophilia. Some of you might have even envisaged Hemophilia as a barrier or obstacle in the path towards your desires.I would like to tell just this to all my dear PwH brothers and sisters, Don't worry and be happy always.We can do almost anything, be almost whatever we want to be.
If you make a list of 100 career options, you can surely find that we can do almost 90 out of that 100.We just need to follow a proper guideline.I would suggest you to go ahead according to your interests.You have a fair chance in every field. If you want to be an engineer, go for Mathematics, if you want to be a doctor/ nurse/paramedic go for Biology, and if you want to be an economist, go for Economics stream.You should definitely discuss with your parents,family,  teachers, seniors to select courses that suit your interests.You can take the help of career counselors too.

My dearest juniors, I want to suggest to you one important thing, in fact the most important thing that you should always keep in your mind, and that is balancing point. And what is that?? What is it's significance, why is it important in a hemophiliac's life? Dear PwHs, now you have entered a different phase of your life, a phase of competitive life.

These upcoming two years , are very crucial in your life. Because, you will be going ahead as per the decision you make now. It is very natural and also a cause for worry because mental stress triggers bleeding episodes. Many of you might have experienced bleeds during exams. There is a lot of difference between the pressure for your 10th Board exams and competitive pressure. You will be preparing for your 12 th Board exams and for competitive exams like Engineering entrance pre medical entrance, NIFT Entrance tests etc. at the same time.

Guys , most of us get synovitis or arthritis ( target joints)during this period. And the main reason is that we tend to focus more on career than on health. And, this is the reason for frequent bleeds and subsequent synovitis and at a latter stage, arthritis.

Let me suggest a few things to you on how to save your joints without hampering your studies and career ambitions! And guys, I tell you, It is very simple. If you follow it, you will be fit and more energetic.

Friends, that ally is discipline and will power. Let me make it simple. I say these from my experience.We should know how to maintain a balance between career pressure and health. If we put emphasis only on studies and doesn't care about proper diet, excercise or does not follow the proscription of your doctor, you will naturally invite problems for you. Proscription means the sort of works that should be avoided. Here in India , access to Factor concentrates Is limited,we don't get Factors prophylactically. In on- demand treatment, we ought to concentrate on strengthening of muscles and on mobility of joints.So , we should always try and maintain a balance between physical excercise and studies. And,this varies from person to person. Suppose there are 2 students, one with target joints and one with normal, healthy joints. The one with target joints should concentrate on fixing those joints while the one with normal ones can do all excercises learned from a good Physiotherapist.

When I was in Standard 9,I got to know about Hemophilia. By the time, I already had arthritis and weak muscles. But, I alleviated my problems by will power, dedication and a disciplined life. I am now physically active, successfully graduated with B Tech from National Institute of Technology, Patna and worked as a software engineer and Banker and is working in a coaching Institute now.

Guys, I would suggest one thing to you all, and that is to always give importance to excercises like you do to studies. Never be stressed about your grades and do not compare yourselves with anyone. If you do excercises daily follow a suggested lifestyle and learn your lessons daily, you won't have to put in extra effort or be in stress during your exams. Ups and downs are a part and parcel of life.But you should face this with courage , will power and proper planning.

I tell these out of my experience. Happiness and excercise,these are the key to success. And before I conclude,I would like the PwHs who couldn't succeed in the exams due to various reasons that you need not lose hope. Never be pessimistic. Be optimistic always and follow my suggestion and keep trying. This was not the only exam which you would be writing in your life and life never stops due to exams. Success and failure are part of life. Keep calm, do excercises, enjoy life and focus on your goals.

Hope you all shall do very well in your studies, career and life.
Thanks and regards,
Chandan Kumar and Team RedLegacy!

Welcome aboard to the Red League !!

We are proud to introduce the new members of our core team.

Chandan Kumar,Our career and academic expert,NIT Patna Alumnus, A severe Hemophiliac with inhibitors, he has worked as a software engineer and as Manager, Canara Bank. He is a career and academic coach and volunteers as Health Co-ordinator, Hemophilia Society Patna Chapter, India.

Shrinivas Kattimani, our technical head, is a severe Hemophilic,He is a software engineer in Wipro and an active volunteer of Hemophilia Society Bangalore Chapter, India.He is a techno wizard.


Vysakh T B,our creative head, is a severe Hemophilic, He is a graphic designer, short- film maker and leader of youth group, Hemophilia Society Kannur Chapter, India.

More the Merrier...Join hands with us

Dear friends,
Heartiest Greetings!!
Red Legacy was born when like minded people who wanted to create awareness about hemophilia among our community and the general public and show case achievements of Persons with Hemophilia met. We have been trying our best to provide accurate information. We are overwhelmed by the love and response. Many people evinced their interest to be a part of the Red Legacy team. We warmly welcome like minded,  enthusiastic,energetic people to enrich our team.

Enthusiasm,Commitment and willingness to share are the only requirements. You can be an advisor,contributor,volunteer,guest writer,Translator, creative writer, graphics / Web designer.
''Individually, we are a drop, Together we are an ocean!! ''
Interested people drop an email at :   redlegacy9@gmail.com
Team RedLegacy!