Get Set Go !!  Part II

Hi my dear PwHs , I got a wonderful response for  my first blog article  regarding career for
hemophiliacs . Thanks for your overwhelming response.

 I wrote about banking career in the  previous career blog of RedlLegacy. Many of our pwhs requested me to write about SSC jobs. As I promised to inform you about all opportunities which we can clench. Now  I am going to write about the SSC jobs.

SSC jobs

Staff Selection Commission is a Government of India body which conduct various
examination for Govt of India.The selected candidate mainly work in the different ministries
of Government of India in different rank. Most of the jobs are non gazetted rank officers,
clerk, multitasking staffs, stenographer and also in Delhi Police. But we are not medically fit
for police jobs -so wont talk for that post.

Let us  start the job one by one.

1.MTS : It is multitasking staff ,where you work as a fourth grade employee in different bodies
of the Government of India like income tax, excise, central secretariat and many more. SSC
conducts the test every year.

SSC Multitasking: Exam Pattern

Written examination will consist of (Paper-I) objective type paper and (Paper-II) descriptive
type as shown below:


Paper I

Paper-I will consist of Objective Type- Multiple choice questions only. The questions will
be set both in English & Hindi. There will be negative marking of 0.25 marks for each
wrong answer.

Subject Questions                                              Maximum marks

General Intelligence& Reasoning                              25 25

Numerical Aptitude                                                   50 50

General English                                                         50 50

General Awareness                                                    25 25    


 2 Hours 10.00 A.M. to 12.00

Paper II

Paper-II will be descriptive in which the candidate will be required to write short essay/letter in English or any language included in the 8th schedule of the Constitution.
Paper-II will only be of qualifying nature.

Subject Maximum

Short Essay / Letter in English or any language included in the 8th Schedule of the Constitution


Educational Qualification: Candidates must have passed Matriculation Examination or equivalent
from a recognized board


2.CHSL- SSC conducts test every year for lower division clerk and data entry operator; you work in
different organisations of the Government of India.

Educational Qualification: Candidates must have passed higher secondary examination or equivalent from a recognized board.

SSC CHSL Exam Pattern: Staff Selection Commission’s (SSC) Combined Higher
Secondary Level (10+2) Examination Pattern are given below...

Scheme of Examination: The examination will consist of a Written Examination and
Skill Test for the post of Data Entry Operator and Written Test and Typing Test for the
post of Postal Assistant/ Sorting Assistant & Lower Division Clerk on Computer.

Written Examination: The Paper will consist of Objective Type- Multiple choice questions
only. The questions will be set both in English & Hindi for Part-I,II, III & IV.

The written examination will consist of one objective type paper as shown below :

Part      Subject                                                                         Maximum

I       General Intelligence                                                  (50 Questions) 50

II      English Language (Basic Knowledge)                     (50 Questions) 50

III Quantitative Aptitude (Basic Arithmetic  Skill)           (50 Questions) 50

IV General Awareness                                                      (50 Questions) 50

Note: There will be negative marking of 0.25 marks for each wrong answer.

B. Skill Test for Data Entry Operator: The Speed of 8000 key depressions per hour on
Computer will be adjudged on the basis of the correct entry of words key depressions as
per the given passage and the duration of the said Test will be 15 (Fifteen) minutes and
printed matter in English containing about 2000-2200 strokes/key-depressions would be
given to each candidate who would enter the same in the Computer. The “Data Entry

Speed” Skill Test would be of qualifying nature.

C. Typing Test for LDCs: Typing Test will be conducted for those candidates who qualify
in the Written Examination. Such Typing Test will be conducted in English or Hindi and
candidates while applying for the Examination, will have to indicate his/her choice/option
for Skill Test Medium in the Application Form. The choice of language in the application
will be final and no change will be allowed.

Candidates opting for English medium should have typing speed of 35 words per minute
and those opting for Hindi medium should have typing speed of 30 words per minute.

3.SSC CGL-It is one of the prestigious examination among the graduates-where you work as
group B non gazetted officers /group B gazetted officers/assistants/income tax inspector/upper division clerks (UDC) and many more in different ministries of Government of India

Educational qualification: Candidate must have a graduation from any recognized
University of India.


Pattern and syllabus of examination: till the last year cgl jobs are mainly divided into two parts.


1.Interview post -Basically the non gazetted group B post are called as interview post ,where
you had to be appear for interview after qualifying in both written examination.

2. Non interview post-This is basically upper division clerk ,tax assistant ,auditor etc. The
selection is based only on the marks of written examination of tier1 and tier 2.
But from this year ,central government has decided to scarp interview from all the group B
posts.

Note-the exact examination pattern is not clear and examination date of tier1 has also be
postponed until the further clarification but the here I am going to discuss the pattern and
syllabus based on the last notification of 2016.
After the scrapping of interview from this year ,SSC had been released notification of CGL
examination pattern in 3 phase.

SSC CGL Change in New Pattern Sample Papers

The Examination will be conducted in three tiers as indicated below:

•  Tier -I – Written Examination (Objective Multiple Choice Type)
•  Tier -II -- Written Examination (Objective Multiple Choice Type)
•  Tier -III -- Computer Proficiency Test/ Skill Test (wherever applicable)/ Document

Verification

SSC CGL Tier I Exam Pattern 2016:

In CGL Tier-I exam, the questions will be given in Objective Type Multiple Choice, set in
both Hindi and English in respect of Parts A, B and C.

This exam will be common for all categories of post.

Tier I written exam

Part A (General Intelligence &Reasoning)   50 Marks -

General Intelligence with Reasoning
Part B (General Awareness)     50 Marks -General Awareness

Part C

(Quantitative Aptitude) 50 Marks -Quantitative Aptitude

SSC Tier II pattern:

Tier-II of the Combined Graduate Level Examination -2016 will be of Objective Type

Multiple Choice and will be conducted over a period of two days

Part Subject Max. Marks/

IV General Studies (Finance and Economics)

III Statistics 200 100 2 Hours

Questions 200 To be notified

I Quantitative abilities              200 100 2 Hours

II English language and comprehension 200 200 2 Hours

Important notes:

• Paper-I & II are necessary for all the categories of posts.
•  Paper-III is only for those applicants who apply for the post of Statistic Investigator Gr. II & Compiler
• Paper IV is only for those candidates who apply for the post of Assistant Audit Officer.

SSC Tier III pattern:

Only those applicants who qualify in all the papers as well as in the aggregate would be
eligible to be considered for being called for Tier – III as Data Entry Skill Test/Computer
Proficiency Test/Document Verification (as per the requirement of position applied for).

There will be negative marking of 0.25 marks for each wrong answer in Tier-I. In Tier-II,
there will be negative marking of 0.25 marks in Paper-II and 0.50 marks in Paper-I and
Paper-III for each wrong answer.

Now this is all about the examination pattern and syllabus.Now our main concern is medical
benefit.

Medical facilities in SSC jobs

Actually, Government of India provide CGHS facilities for their employee. The Central
Government Health Scheme (CGHS) was started under the Indian Ministry of Health and
Family Welfare in 1954 with the objective of providing comprehensive medical care facilities
to Central Government employees, pensioners and their dependents residing in CGHS
covered cities.

This facilities is one of the best for the hemophilics(as I think) where they get medicine directly
from the CGHS dispensary.  PwHs are eligible to get prophylaxis too. There is no
reimbursement type scheme for cghs card holder. The best part of cghs - they have their own
dispensaries in different cities of India. Right now there are a total of 25 cities where cghs
dispensary is available over India.

The Central Govt. Health Scheme is applicable to the following categories of people residing in
CGHS covered cities:

•  All Central Govt. Servants paid from Civil Estimates (other than those employed in Railway
• Services and those employed under Delhi Administration except members of Delhi Police Force)

•  Pensioners drawing pension from Civil Estimates and their family members (Pensioner residing in non- CGHS areas also may obtain CGHS Card from nearest CGHS covered City)

•  Members and Ex-members of Parliament

•  Judges of the Supreme Court and High Court (sitting and retired)

•  Freedom Fighters

•  Central Government Pensioners, Employees of Semi-Autonomous bodies/Semi Government Organisations

•  Accredited Journalists

•  Ex-Governors and Ex-Vice-Presidents of India

Now you  think ,Judge of Supreme Court of India ,IAS officers ,Vice President of India .Members of
Parliament get health facilities through this CGHS, hence we can easily envisage the facilities of cghs.

So the PwHs who are preparing for a job should seriously think about ssc jobs.

In SSC,   the PwHs who have disability certificate can apply in disable category and are entitled to
get reservation and relaxations.

Total 3% seat are reserved for the person with disability and 10 years age relaxation are also
entitled.

Note: please check the nature of disability like OL, OAL, BL etc before applying in disability.

OL-one leg,BL-both legs, OAL-one arm leg

SSC also conducts test for stenographer post. you should know the shorthand for this post.

Hope this article will help you too in career selection.

You can contact me anytime for further information.

My email id-chandanshallu@gmail.com.

All the best.

FASTER,FASTER,FASTER,....UNTIL THE THRILL OF SPEED OVERCOMES THE FEAR OF DEATH !!


A little boy, sat in his home,flying his toy car high....screaming and shouting "Vroooooooooooom....." with joy and excitement.

  The little kid was Azeer Abdulkalam from Kerala,India.The speeding wheels and the racing tracks were always his biggest passion.

Azeer is a Person with severe Hemophilia A, a condition which results in very low levels of the blood protein ,Factor VIII or Anti Hemophilic Factor , needed for the normal clotting of blood.  Hence, every single person told him, " Racing is a big NO, NO for you!"


But,Azeer firmly believes that a Person with Hemophilia can do absolutely anything a normal, healthy person can. Like most of the hemophiliacs of developing countries, Azeer too have permanent deformities in his joints due to repeated bleeds .He cannot flex his left knee  fully.But,this did not stop him. He believes in living the life to fullest and suggests not  to live in constant fear of bleeds or mishaps.It is this belief, strong will and determination, and the never ending passion for the sport that brought him so close to his life's dream.

However, chasing his dream was not at all an easy task. Because of the medical condition, and also the financial state of his family,this youngster had to bury his dreams.

He  comes from a humble background, and used to do part-time  jobs since his early years to help meet the needs of the family.At present,he is a sales personnel at a pre-owned cars showroom.He is the bread winner of the family  which include his ailing parents, sister ,wife and his little girl who is just a year old.His father suffers from renal failure and is on dialysis thrice a week.


True passion and talent will not go unnoticed.So happened with this youngster too.Diljith, a Formula 0ne racer and a National Champion from Thrissur,Kerala,happened to meet Azeer. Diljith had started a Racing Academy and was planning to build a good team for the National Championship,and he invited Azeer to be a part of it.

To be in the team,he had to pass the selection process and undergo training.He easily got through the selection process and also the first phase of training ,  "Basic" ,in the very first attempt.

To participate in the Championship,Azeer has to successfully complete the remaining 2 phases: Advanced and Pro.However,racing is a very expensive sport ,and the training and works on the car needs a lot of money.The Advanced session will need around Rupees 30,000 ($450) and a Junior Championship will need around Rupees 8,00,000 ($12,000).
Azeer is very confident that,if he completes the training and continue further,he will  win the Championship.

The race for Advanced phase is scheduled to be on the 22nd of May ,2016,which happens to be  his 26th  birthday.He adds that ,this birthday would be the most painful one in his life,if he cannot participate in the Advanced session due to any reason.

Azeer is a gifted racer, says his trainer.He has immense potential and unmatched passion for the sport. He has shown excellent performance in the races so far and if trained well, can emerge as a National Champion. 

  Little drops of water makes the gigantic ocean. We are pretty sure that this rising star will get all the deserved support and encouragement from the society for all his endeavors. 

We wish all luck to Azeer Abdulkalam!! 


You may communicate with him by email: azeerkalam@icloud.com

----Hemant Naidu Pulijala , Dr.Anupama Pattiyeri

     &Team RedLegacy !

Get,Set,Go!! 
A series on Career and Educational opportunities for PwHs


Red Legacy is pleased to announce that we are starting a series on career and education opportunities that best suits PwHs. A good job with good medical coverage is one of the biggest dreams of all persons with Hemophilia.

Mr.Chandan Kumar, Health Co-ordinator, Hemophilia Society Patna Chapter , formerly employed in Canara Bank and a Competitive Exams Coach,he is well versed in this regard, and we are proud to have him to guide you all.


A series on Career and Educational opportunities for PwHs : Banking Sector

Hi PwHs ,my name is Chandan kumar, I have severe Haemophilia A with positive inhibitor .I am 27 years old ,engineer by profession. I completed my B.Tech degree from NIT, Patna in 2011 (branch-ece).

I get many calls from pwhs  enquiring about job opportunities, and  all of them ask a common question -plethora of jobs is available,which job is best for us (hemophilics)? As we know , thousands of vacancy publish  every year in different government organisations like railway, banking ,ssc ,insurance  ,state government job etc. Hence, I am going to discuss about medical facilities available in different type of  jobs & which type of job you could get  depending  on  your qualification.

Concerns of every PwH students are very similar. And the most common  query is "Where will  we get best the medical facility?". Although every organisation, like Banking sector , Indian Railways,ESIC ,SSC etc have their own medical facility and almost all of them cover haemophilia.they are a bit different from each other and their recruitment methods are different too.So,  I  shall brief  you in this regard one by one.

We shall start with the Banking sector

Basically ,there are 3 kinds of job opportunities in this sector :

1.Clerical - IBPS and SBI conducts test for clerk every year. This is basically a  8 hours desk job where in  you work as single window operator, in  customer relationship,passbook update etc. Vacancies are state wise, so amid application filling process you have to opt the state where you want to work .This job is mainly computer based, so you have to work throughout on keyboard.
In clerical job you are entitled to get medical reimbursement.

Educational qualification-The applicant  should be a graduate  and you must have better understanding of regional language, for example,  if you opt Gujarat,  you must have a basic understanding of Gujarati .

Pattern and syllabus for  bank  tests :clerical post -

IBPS  exams for  clerical posts  have  Pre and Main written exams.

Pre exam- As per official notice ,IBPS clerk pre exam will be of 1 hour duration.

The exam is based on a model of a  total of 100 questions divided into  the following sections

1.English language    -30 questions  -30 marks

2.Numerical ability    -35 questions -35 marks

3.Reasononig ability  -35 questions -35 marks

Main exam  - IBPS clerk  main paper consist of 5 sections. i.e

1.Reasoning                                   -40 questions   -40 marks

2.English language                        -40 questions   -40 marks

3.Quantitative aptitude                 -40 questions  -40 marks

4.General Awareness                     -40 questions   -40 marks

5.Computer knowledge                 -40 questions   -40 marks.

The main examination will be of 2 hour duration.

All the examinations are on-line and computer-based.

Salary-The initial basic pay of a clerk will be Rs 18100-19800 including allowances  like HRA , medical benefits etc. Bank clerk salary in SBI is Rs. 2000/- higher  compared to other banks.

2.Bank Probationary Officer -It is an officer class job where you can work as an Assistant Manager after completion of probationary period. Promotion chance inside bank is very good and you can be a Manager within 3 years ,if you can clear all the promotional exams.IBPS , SBI and SBI associate banks conduct test every year.

Pattern and syllabus -the pattern and syllabus are same of banking clerk examination.

But after successful completion of main examination ,an  interview will also be held.Final result will be prepared after addition of 80% of mains + 20% of interview.

Medical coverage-bank have domiciliary treatment provision for Haemophilia, you would get 100% reimbursement for Factor Concentrates.

Salary - Total Salary ( without HRA ) of Bank PO comes to Rs.35,700 - 36,570. While considering the HRA into account, it becomes Rs. 37,360 - 38,700

Bank PO  salary in SBI  is Rs. 5000 to 6000/- higher compared to other banks.

3.Specialist Officer-This is basically for the ones  who have  specialised degree in respective fields

like engineering, agriculture, medical, chartered  accountant etc

The salary norms and medical coverage is similar to bank PO.

Medical coverage rule :

If you are preparing for bank examination -good news for you-banks have domiciliary treatment provision for Haemophilia .

    (i)        DOMICILIARY TREATMENT shall also be covered under this scheme i.e. treatment taken for specified diseases which may or may not require hospitalization as mentioned herein below.

Do        Domiciliary Hospitalization / Domiciliary Treatment : Medical expenses incurred in case of the following diseases which need Domiciliary Hospitalization /domiciliary treatment as may be certified by the recognized hospital authorities and bank's ’medical officer shall be deemed as hospitalization expenses and reimbursed to the extent of 100%.

·                  Cancer,

·                  Leukemia,

·                  Thalassemia,

·                  Tuberculosis,

·                  Paralysis,

·                  Cardiac Ailments ,

·                  Pleurisy ,

·                  Leprosy,

·                  Kidney Ailment,

·                  All Seizure disorders,

·                  Parkinson’s diseases,

·                  Psychiatric disorder including schizophrenia and psychotherapy,

·                  Diabetes and its complications, hypertension,

·                  Asthma,

·                  Hepatitis –B,

·                  Hepatitis - C,

·                 Hemophilia,

·                  Myasthenia gravis,

·                  Wilson’s disease,

·                  Ulcerative Colitis,

·                  Epidermolysis bullosa,

·                  Venous Thrombosis (not caused by smoking)

·                  Aplastic Anaemia, Psoriasis,

·                  Third Degree burns,

·                  Arthritis,

·                  Hypothyroidism,

·                  Expenses incurred on radiotherapy and chemotherapy in the treatment of cancer and leukemia,

·                  Glaucoma,

·                  Tumor,

·                  Diphtheria,

·                  Malaria,

·                  Non-Alcoholic Cirrhosis of Liver,

·                  Purpura,

·                  Typhoid,

·                  Accidents of Serious Nature,

·                  Cerebral Palsy,

·                  Polio,

·                  All strokes leading to Paralysis,

·                  Hemorrhages caused by accidents,

·                  All animal/reptile/insect bite or sting,

·                  Chronic pancreatitis,

·                  Immuno suppressants,

·                  Multiple sclerosis / motor neuron disease,

·                 Status asthmaticus, 

·                  Sequelea of meningitis,

·                  Osteoporosis,

·                  Muscular dystrophies,

·                  Sleep apnea  syndrome(not related to obesity),

·                  Any organ related (chronic) condition,

·                  Sickle cell disease,

·                  Systemic lupus erythematous (SLE), 

·                  Any connective  tissue  disorder, 

·                  Varicose  veins,  

·                  Thrombo  embolism ,venous thrombosis/ venous thrombo embolism (VTE), 

·                  Growth disorders,

·                  Graves’ disease,

·                  Chronic Pulmonary Disease,

·                  Chronic Bronchitis,

·                  Physiotherapyand

·                  Swine flu

  (ii)        The cost of medicines, investigations, and consultations, etc.in respect of domiciliary treatment shall be reimbursed for the period stated by the specialist in Prescription. If no period stated, the prescription for the purpose of reimbursement shall be valid for a period not exceeding 90 days.

 (iii)        ID CARD: ID Cards would be issued to all the  employees/ dependent family members/retired  employees/their dependents for the purpose of availing cashless facility in network hospitals. 

(iv)        PRE-EXISTING DISEASE: Pre Existing Diseases would be covered for reimbursement under this scheme.

  (v)        PRE–HOSPITALISATION MEDICAL EXPENSES: Medical expenses incurred immediately 30 days before the employee is hospitalized will be considered as part of a claim

(vi)        POST HOSPITALISATION MEDICAL EXPENSES:  Relevant medical expenses incurred immediately 90 days after the employee/ dependent/ retirement employee is discharged from the hospital

The PwHs who has  muscular weakness and joint arthritis can get  handicapped reservation according to 1995 disability act.

Some popular website for banking preparation.

1.http://www.linkfried.com/10-website-for-banking-preparation/

2.http://www.gr8ambitionz.com/

3.http://www.bankexamsindia.com/

4.http://bank-po.org/

Carriers of Hemophilia: Carry the genes ,but not the stigma !

Shruti : Hey Riya,you have a secret admirer!! That Rahul, I have seen him look at you all the time with that silly "I am in love" smiling  face.

Riya : I don't like all this nonsense Shruti,just shut up  and go

Shruti :Arrey,what happened? Chill!! I know you like him too.Don't lie to me..

Riya : You know everything,why are you teasing me and messing with me??

Shruti : Because you are a dumbo. Riya, I talked to my cousin who is a doctor,she told me that you don't have to worry at all.It is not as complicated as you think it is.You just overthink as always.
See, we are not even sure that you are a carrier, and even if you are, there are lots of options out there. There is solution for all your problems.
I know you are scared after hearing the bad experiences of a few.There are such jerks in this world,but majority are not like that.
Do not lock yourself in the tiny cage you have made for yourself.Just live the life !

A carrier is a person who carries the altered gene for Hemophilia,but does not have the condition.They can be Obligate carriers(who necessarily have the Hemophilia gene which they inherited from their father) or Possible carriers (who have the possibility of being a carrier ).

Obligate carriers include :

• All daughters of a father with Hemophilia
• Mothers of one son with Hemophilia and who have atleast one other family member with Hemophilia (brother, maternal grandfather, uncle,nephew or cousin)
• Mothers of one son with Hemophilia and who have a family member who is a known carrier of the Hemophilia gene (mother,sister,maternal grandmother,aunt,niece or cousin)
• Mothers of two or more sons with Hemophilia

Possible carriers include : 

• All daughters of a carrier
• Mothers of one son with Hemophiia who do not have  any other family members who have Hemophilia (or are carriers)
• Sisters,mothers, maternal grandmother,aunts,nieces and female cousins of carriers

Should I test for carrier status ,and when ??

It is entirely the decision of you and your family to undergo the genetic testing and know if you are a carrier or not.

But,carriers may have a low level of factors and can be at risk of bleeding following trauma,tooth extraction,surgeries etc.Some have excess menstrual bleeding too.So,it is always better to have a Factor assay done in all possible carriers so that all the necessary precautions can be taken if the levels are found low.But remember,Factor levels do not confirm or negate your carrier status.

Also,there is no specific age to get the test done,many do it early so that the child gets enough time to get in terms with it gradually , and some wait until they are adults.However,it is always better to get the test done before a suspected carrier gets pregnant.

Tests for Identifying carriers 

• Direct Mutation Testing 

           Many mutations cause Hemophilia.In this test ,we check for the specific mutation in your family.

          For this test, the mutation of the male family member with Hemophilia have to be identified first using his blood sample. In about 98% cases, a mutation can be identified.Then, the  possible carrier female's blood sample  is collected and her DNA checked for the specific mutation.
The results will be available only after  a few weeks.
Hence, the best idea would be to get the test done  well in advance ,before planning your pregnancy.

This is the most accurate test for identifying carriers.It is more expensive.

• Linkage (Indirect) Testing

           In this method, the gene carrier status of the female is determined by tracking the gene in the family.Blood samples are collected from the possible carriers and from the male with Hemophilia and other family members.A comparison of the patterns of the linked DNA is made. The technicians check for the same pattern in DNA of the person with Hemophilia and in the DNA of family members.

This test is not as accurate as genetic testing.It does not provide information for all families.It can be done when a mutation cannot be identified.

• Factor Assay

Carriers may have low levels of clotting factors.But,the levels do not confirm carrier status. The factor levels increase during pregnancy as a natural protective measure reaching the highest during the third trimester. Hence, checking your factor levels during pregnancy may not reveal the actual lower levels.

• Pedigree or Family Tree

This is not a test to identify carriers.But,it is always advisable to draw a Family Tree or Pedigree.It generally includes three generations: Children,parents,aunts,uncles,cousins and grandparents.

It will help identify the possible carriers of Hemophilia

Why know your carrier status ?

It can provide valuable information to the women and their families regarding her Factor levels and also help manage her own health, help make wise reproductive decisions .It also helps to identify other possible carriers.

A symptomatic carrier should take precautions  while using over the counter drugs like Aspirin, and Non steroidal anti-inflammatory drugs that may interfere with normal clotting of blood.Also, she should be cautious about participating in contact sports and should always carry an appropriate medical identification with her.

If you are concerned about transmitting the Hemophilia gene to the coming generations, Pre natal diagnosis can help you.

Pre-natal diagnosis is  identifying Hemophilia in the foetus.It can be done by :

• Chorionic villous sampling (CVS)

         It is an invasive procedure done between 11 weeks and 14 weeks of pregnancy.In this,a sample of the chorionic villi  cells from the placenta is obtained by inserting a fine needle through the abdomen  or by inserting a thin catheter through the mother's vagina under local anaesthesia and ultrasonic guidance. The cells are then tested to identify the Hemophilia gene.

• Amniocentesis 

This is another invasive procedure  which can be done between 15 weeks and 20 weeks of pregnancy.A fine needle is inserted into the uterus through the abdomen under ultrasonic guidance and a small amount of amniotic  fluid is collected. Amniotic fluid contains foetal cells.These cells are tested to identify Hemophilia.

Also, there are some conception options to eliminate the risk of having an affected child

• In vitro fertilization (IVF) with pre-implantation diagnosis(PGD)

       This is quite an expensive procedure and not available at all centers.As in every IVF,it has only a 30% success rate per cycle.In this, the woman's eggs are retrieved and fertilized with the sperms of her partner in a laboratory.The embryos are tested for the Hemophilia gene at a very early stage and only those without the altered gene are implanted into the mother's womb.

However, a chorionic villous sampling/amniocentesis may still be needed for confirmation.

• IVF with egg donation

          In this,donor eggs from a fertile woman who is not a carrier is fertilized with the sperms of the partner.The embryos are then implanted into the  mother's womb 

• Sperm sorting

        This is still just a research tool and not readily available.In this,only sperms carrying an X chromosome is used thus ensuring birth of a female child. This cannot prevent birth of carrier females.

These are a few methods to prevent birth of a child with Hemophilia .You need not panic even if you have one.With the advent of better clotting factor concentrates and other treatment facilities, and governmental policies beneficial to the hemophiliacs, management of Hemophilia is getting better day by day. These information are shared here to keep yourself healthy and help you lead a good,happy life .

---- Hemant Naidu Pulijala, Dr.Anupama Pattiyeri

     &Team RedLegacy !

Karunya Benevolent Fund( KBF):A scheme which includes free factor therapy for registered PwHs of Kerala,India . Rome was not built in a day,so was KBF for Hemophilia

Karunya Benevolent Fund: The compassionate touch which changed the life of Persons with Hemophilia of Kerala

"Karunyam" means compassion or mercy. The Government of Kerala has aptly named the Benevolent Scheme  "Karunya".

Karunya Benevolent Fund,  the Health Service Scheme that finances treatment expenses of poor sections in the society. It is run by the revenue earned from Karunya Lottery by the Government of Kerala.
Persons from poor economic background suffering from Cancer, Hemophilia, Kidney disorders, Heart diseases and those who are on Palliative Care get financial assistance through the Scheme.

Finance Minister, Shri K M Mani announced the Karunya Benevolent Fund in his 2011-2012 Budget. Karunya lotteries were started in October 2011, and on 26 February 2012, the then Minister for Defence, Government of India, Shri A K Antony inaugurated the State level Karunya Benevolent Fund. A State Committee presided by the Finance Minister and District Committees presided by District Collectors were formed.
Karunya even attracted those who were not in the habit of trying their luck.

Initially, the help was in the form of financial assistance of a maximum amount of Rupees Two lakhs per patient. Patients from BPL families and also from APL families whose annual income is less than Rs.2.5 lakhs per annum would be eligible for the Scheme. Also, financial assistance was limited to only one person of a beneficiary family.

Because of the continuous lobbying by the Hemophilia Societies of Kerala and well wishers, Hemophilia was included in the Karunya Benevolent Fund. Initially, only PwHs in the BPL category were included.
When the high cost of the treatment was brought into the notice of the Government,those belonging to the APL category were also included.

The support in the free factors had a ceiling of Rupees Two lakhs for their entire lifetime.

In the Government Order 403/2013 dated 18-05-2013, it was decided that if there is more than 1 PwH in a family, the benefits be given so that each PwH received treatment upto Rupees Two lakhs, instead of the earlier guidelines saying only one patient from a beneficiary family could avail the benefits.
Finally, in the Government Order 1445/2015 dated 18-5-2015. Government of Kerala, Department of Health and Family Welfare, and Kerala Medical Services Corporation ordered to provide free factor therapy to all Persons with Hemophilia registered in the scheme for their entire lifetime, irrespective of the APL /BPL category.
Factors VIII, IX, VII a and FEIBA are available through the Karunya Benevolent Fund (KBF).
There are around 1200 Persons with Hemophilia in Kerala.

Around 996 have registered in KBF and 850 have registered in the Samashwasam III project by the Social Security Mission of Government of Kerala which provides a monthly pension of One thousand Rupees.
A unique KBF ID is given to all the registered PwHs. Free factors can be obtained from Karunya Pharmacy on submitting prescription from treating doctor working in the Government sector. The amount corresponding to the cost of the factors will be deducted from the PwH's KBF account.
The pharmacy provides a bill to keep records of consumption.
Upon infusion of the Factor concentrates, the cartons with the empty vials should be submitted to the Karunya pharmacy along with the Utilisation Certificate given by the treating doctor. The certificate also has a patient / guardian declaration of utilisation of factors.

Only upon submission of these will the beneficiary get Factor concentrates again.
The Karunya Stores have a separate counter too for KBF beneficiaries so that they can obtain the factors easily.

However, the fact that it runs solely by the revenue from Karunya lotteries and that there is no other budget allocation for Hemophilia is a matter of concern.
Also, free factor therapy is available only to the registered PwHs. The Government Hospitals do not stock Factor concentrates. Hence, unregistered PwHs will have to buy Factor Concentrates out of their own pockets.
Also, there may not be sufficient stock at times.

---- Hemant Naidu Pulijala, Dr.Anupama Pattiyeri

     &Team RedLegacy !

APRIL 17: World Hemophilia Day, Birth Anniversary of Frank Schnabel

World Hemophilia Day

 It is an International observance held annually on April 17  by the World Federation of Hemophilia. It is an awareness day for Hemophilia and other bleeding disorders, which also serves to raise funds and attract volunteers for the WFH. It was started in 1989. April 17 was chosen in honor of Frank Schnabel, the founder of The World Federation of Hemophilia.

Themes of World Hemophilia Day

2016: Treatment for All
           The vision of All
2015: Building a family of support
2014: Speak Out. Create Change
2013: 50 years of advancing treatment for all
2012: Close the Gap
2011: Be inspired, Get involved in Treatment for All
2010: The many Faces of Bleeding Disorders - United to Achieve Treatment for All
2009: Together, We Care
2008:Count me In
2007: Improve your Life!

Frank Schnabel

A Montreal businessman born with severe Hemophilia A.He established The World Federation of Hemophilia (WFH) at Montreal in 1963. His vision was to improve treatment and care for " the hundreds of thousands of hemophiliacs" worldwide through a new International organization.
From a base of six national Hemophilia Societies, the Federation grew rapidly. It held World Congress every two years and created a global network of healthcare providers,national Hemophilia associations,people with Hemophilia and their families. At the 1964 WFH Congress in Amsterdam, the structure of the new organization was defined with a constitution and an executive board.
It reached a turning point when the World Health Organization acknowledged the Federation's growing international reputation and established official relation. The two bodies began working on joint projects.
 In 1982, AIDS hit the Hemophilia community. Connection of HIV infection in hemophilia patients and plasma derived treatment concentrates was presented in the Stockholm World Congress by Dr.Bruce Eratt. AIDS contracted from HIV-contaminated  treatment products swept through the Hemophilia community.
Frank Schnabel was among the victims. He passed away in 1987. Until the end, he reaffirmed his vision with the words," We are going to emerge victorious "

On the 5Oth anniversary of WFH, a video was released showing moments from the life of Frank Schnabel.
 The Journey Begins  :   https://www.youtube.com/watch?v=qqYbNeH4bOk&feature=youtu.be

International Frank Schnabel Volunteer Award

Established in 2004 in honor of Frank Schnabel,it is given to an individual with hemophilia, an inherited bleeding disorder,or to a family member, who has contributed significantly in furthering the mission and goals of the WFH. It is given every two years of Congress.

Past recipients

2004 - Ashok Verma
    Hemophilia Federation India
2006 - Yuri Zhulyov
Russian Hemophilia Society
2008 - Jean-Michel Bouchez
Association Française des Hémophiles
2010 - Antonio Luque de Garrido
Venezuelan Association of Hemophilia (AVH)
2012 - Martha Patricia Monteros Rincön
Federacion de Hemofilia de LA Republica Mexicana
2014 - David Page
 Canadian Hemophilia Society
 Brian O' Mahony
Irish Hemophilia Society

Light it up Red!

Each year, new landmarks and monuments are added to the list of WFH partners who support World Hemophilia Day by changing their lighting red on April 17

If there is a landmark near you, contact them to see if it can be lit red on April 17.
If not, just turn your lights red and participate at home.
Light it up red.

----Hemant  Naidu Pulijala , Dr.Anupama Pattiyeri

     &Team RedLegacy !