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JOURNEY  WITH  HEMOPHILIA

I am T. Jaipal, 73 years old ,Member and Treasurer of Hemophilia society  Pondicherry chapter. My journey remained from South to North and North to South .

I was born on 6thOctober 1950 at Chennai. My father being central government staff got transferred to Jabalpur and we got settled there. Up to 12 years of my age days passed with full of pain and treated with Home remedies.  There was a small Rt knee hit and from then onwards spontaneous bleeding occurred with a big swelling and intolerable pain. In spite of pain killer medicine taken, Rt, Knee got totally stiff and then onwards RT Knee had contracture. Then many episodes of joint and  muscle  bleed occurred, and  I started my career along with the pain and Courage given by God .

I completed my HSSC examination and joined Central  Government  as LDC Staff. From then onwards I reached up to Office Superintendent  Level -1, in Administration Division, in no time I became handicapped due to repeated joint and muscle bleed

Things were going normal and one fine morning spontaneous Gum bleeding occurred and  it took 3 to 4 days to become normal.  In the year 2004, September Intra Abdominal bleed occurred and not able to find reason and 10bottles of wholesome blood given to stop the bleeding. I again consulted with the Dr’s and again Medical checkups was done thoroughly and found that it is blood clotting disorder Hemophilia. Blood Assay was done and found F VIII < 1% which is severe. Then I got  Registered in Hemophilia society Jabalpur as a member.

In the month  of April 2006 I got Voluntary Retirement leaving 5 years service. I had an opportunity to settle in Pondicherry along with my son and my wife.  Since 2011, we settled in Pondicherry. I called Mr. A. Balaji, secretary of Hemophilia society Pondicherry chapter,and he  advised  me to contact Dr. P. Nalini, and get registered in Hemophilia society Pondicherry chapter. Then                       Dr. P.Nalini called me  over phone to come to office   immediately and she  examined all the medical records and told to get  registered  in the Pondicherry chapter. She felt very sad due to disability happened to me

From then onwards Dr. P. Nalini is fully taking care of me. She with the help JIPMER Central Government Health Scheme, received  Factor VIII for me  as regular prophylaxis. It would not be out of order to say that Prof. Dr. P. Nalini is GOD for Hemophiliacs of Pondicherry chapter providing personnel  touch  to all hemophiliacs irrespect of caste, creed and colour. This  year 2023 Prof. Dr. P. Nalini is awarded with Padma Shri by the Government of India.

I am living peaceful life with the help of Hemophilia society Pondicherry chapter,

JIPMER Doctors, Central Government Health Scheme, and along with my family support also.

Thanking you,

1. Jaipal,73 years old, F VIII < 1%(Severe)

Treasurer and Member

Hemophilia society Pondicherry chapter

Hi, Greetings for the Day. 

I myself Mr. Pritish Navnath Desai sharing a story whether its success story or struggle story that you all decide. The guy name Pritish born on 14 October 1985 as a healthy and active baby. All three families Desai Family, Mhatre Family , Pathare Family were into celebration. Their celebration won’t last for long as when I was 1.5 year old I diagnoses with Haemophilia B factor 9 deficiency less than 1 ℅ . All three families are in tense but DIN of Wadia Hospital Dr. Karim Boy and their team help me to meet my success. I have seen lots of bleeds, many times I given the exam from hospital. So many things. I have seen many downs in my life specially love life due to Haemophilia , but it was ok. I have Lost opportunity to join Indian Air Force, also Lost precious job in Icici Bank due to this, but it was ok. But one Company stands with me that’s Jaguar LandRover it helps me grow it teaches me engineering skill, although I am MBA in finance and MBA in banking. 

When I look back I See the guy who destroy thousand times and rebuilt. That’s me. 

14/6/1994 a day after joining as Paediatrician in Government Hospital Aluva. Called to see a boy with excruciating pain and swelling of the knee joint, I was totally at a loss as to how to manage the case. The patient had a white ID card from Christian Medical College, Vellore identifying him as Hemophilia A severe patient. I rushed to my adjacent RMO Quarters to check with Nelson’s Text Book of Paediatrics as I had not seen a case of hemophilia before. The only option at that time was Cryoprecipitate which was available with the Components Separation Unit at Cochin. With 6 units twice daily he became alright. The child’s younger brother had added Duchenne Muscular Dystrophy also an X-linked disorder that proved fatal and he succumbed to respiratory paralysis below ten years of age.

Brush with this thereto unfamiliar disease made me associate with HFI (Haemophilia Federation of India) Ankamali chapter. At their request, we arranged a component separation license to ensure a free supply of cryoprecipitate the only treatment available. Occasionally the Chapter used to receive factor concentrates from the World Federation of Haemophilia as donations. However, the patient conclave organized in 2012 with the participation of local bodies and ministers proved to be an eye-opener and on World Hemophilia Day 2013 the foundation stone for the first and only Comprehensive  Haemophilia Treatment Centre was laid. On February 20th, 2014 the Centre was opened by the Chief Minister who announced on-demand factor treatment for children below 18 and a monthly pension of Rs.1000/- The very next year 20th March 2015 at the valedictory function of the National HTC conclave hosted by us the Chief Minister announced the extension of ODT to all patients and prophylaxis for children in the District. In 2021 the Government of Kerala under the Asadhara programme extended Universal Paediatric Prophylaxis and adult ODT in the state.  In 2020 we started nonfactor therapy also and now we have ten kids on Emicizumab. We could contribute in our own humble manner to the advocacy efforts along with HFI. My 50 years long stint with Health Services Department was also helpful. We are helped by the Hematology Department of Amrita Institute of Medical Sciences. 

We have 1071 PwH enrolled here (883 HA + 188HB) Looking back on the plight of PwH. Our laboratory has EQADS with WFH and Christian Medical College, Vellore. The centre is a participant of WBDR and just completed 4 years  WFHTwinning Programme with New Castle upon Tyne. We have had 24 publications in the last 9 years. WFH recognized our WBDR performance, Twinning efforts, and Laboratory services. 

Sufro de von willebrand, ya que la heredé de mi papá. Soy la tercera generación con esta condición, siempre pensé que era normal tener anemia y sangrados abundantes durante mi menstruación (igual que mis tias), pero al salir del país me di cuenta que hay otras opciones para las personas con mi condición y que no tenía que vivir con anemia, así que gracias a la hematologa que me atendió en Ecuador empecé a tomar acido tranexanico y desmopresina, eso me ayudó bastante y pide tener un mejor control del sangrado. Actualmente uso Mirena y la menstruación prácticamente se detuvo. También solo uso factor cuando tengo una operación o extracción dental, y por primera vez tengo factor en casos de emergencia, por lo cual estoy muy agradecida, ya que hace un par de años tuve una operación y durante el postoperatorio tuve una hemorragia y nada de factor para poder controlarla. Solo el ácido tranexanico me ayudó en ese momento. En fin, agradezco a todos los que me han ayudado en este camino de padecer von willebrand y que me enseñaron que se puede tener buena calidad de vida a pesar de los sangrados. 

Hola me llamo Nayeli Dueñas soy mamá de Ian Lozano un pequeño de 6 años con Hemofilia A Leve , a Ian le detectaron la enfermedad cuando el tenia apenas 2 añitos en mi experiencia puedo decirles que siendo una enfermedad tan rara y muy poco conocida me inundó y nos inundó a mí , a mi esposo y a mis hijos un miedo terrible y más por qué veíamos a ni ñino tan chiquito y tan indefenso … 

Hoy gracias a su tratamiento , a la información que se brinda acerca de la Hemofilia, a los especialistas que llevan su caso y a mi familia por el apoyo hoy mi hijo lleva una calidad de vida mejor y esperemos que así siga … 

Un beso y un abrazo desde Guadalajara Jalisco México ! 

Hola me llamo Casandra Ramirez y soy madre de un hijo hemofilico ,se llama Juan Antonio de 16 años, el cual tiene 2 hermanas mayores podrán imaginarse que Juan siendo un hombresito después de 2 mujeres ,me sentía realizada como madre ya mi hijo varón y fue 6 meses después de su nacimiento que descubrimos que era hemofilico , en esos momentos mi mundo se vino abajo ,solo pensaba que mi hijo moriría en cualquier momento ,no teníamos nada de conocimiento referente a la enfermedad ,ni medicamento ,…fue tan doloroso ver Ami hijo llorando por las noches con tanto dolor en sus tobillos por el simple hecho de querer llevar una vida como cualquier niño de su edad..pero gracias a Dios a la edad de 6 años buscamos ayuda en otro estado ,llegamos a nuevo león directo al hospital universitario buscando atención para mi Juan y así fue me dijeron que podía llevar su tratamiento y atención personalizada con hematólogo,trauma,genética…y fue ahí donde aprendimos a tratar la hemofilia cómo un padecimiento llevadero con sus cuidados y profilaxis pertinente ,agradezco enorme mente a la Dra. Villarreal encargada de la clínica de hemofilia y la Lic. Laura Páez nuestra trabajadora social que siempre nos llevan de la mano cada una en atención física y atención emocional ya que la Lic. Laura Paez siempre está al pendiente de que nosotros como padres seamos responsables y puntuales con esta atención para nuestros hijos …desde que llegamos a la clinica de hemofilia del hospital universitario nuestra perspectiva de vida cambio ,hoy por hoy se que mi hijo puede realizarse como cualquier otro adolescente y todo es por educarnos respecto ala hemofilia y claro llevar su profilaxis correctamente ..nunca perdamos las esperanzas …gracias

Hola buen día 

Solo paso por aquí a saludar y a contar

Soy portadora Hemofilia Severa 

Tengo un hermano vivo Hemofílico y uno ya fallecido 

Dos primos vivos 

أطيب التمنيات باليوم العالمي للهيموفيليا انضممت إلى الاتحاد العالمي للهيموفيليا في عام 2015 – في البداية كمدير إقليمي لإفريقيا والشرق الأوسط والآن أغطي الشرق الأوسط فقط. كانت السنوات الثماني الماضية رحلة رائعة للقاء العديد من الأشخاص الملهمين المصابين بالهيموفيليا والأمهات والآباء والإخوة والأخوات ولقاء الأشخاص في المجال الطبي المهني الذين يعتنون بهم والحكومات التي تدعمهم. من خلال هذه الرحلة ، تعلمت أنه من خلال الجهود التعاونية لجميع أصحاب المصلحة ، يصبح حتى الهدف الأكثر صعوبة أو بعيدًا ممكنًا. إن الجهود الدؤوبة لهذا المجتمع هي التي ستستمر في تحقيق اختراقات في توفير الوصول إلى العلاج لمن هم في أمس الحاجة إليه. استمروا في العمل العظيم. إنه لشرف لنا أن نلتقي بكم جميعًا ، ، وأن نقرأ قصصكم الجماعية وأن نعمل عن كثب مع العديد منكم وندعمكم بأفضل ما نستطيع

I wanted to share a really nice experience I had recently with one of our adolescent females, with Von willebrand disease, who has moved from children’s services to our adults.  

She had seen our consultant in clinic & arranged to come & learn how to self inject DDAVP for period management, alongside starting tranexamic acid. 

Asides from making me feel old because I remember her being born, her dad has Von willebrand disease and we look after multiple generations of her family, it was really great to spend some quality time with her going over her disease, access to care & teaching her how to treat. 

About 10 days later she made contact and asked to come back and run through some bits. I thought perhaps I’d missed something with her self administration education but on arrival she produced a list of questions for me. 

We proceeded to spend 45-60 minutes going through more details about treatment options, including an introduction to treating with Von willebrand factor concentrate if DDAVP did not prove adequate for bleeding control. We discussed how & when she can access treatment, other options for period management including the option for joint review in our gynaecology/bleeding disorders clinic, supporting her in university choices, holiday advice & general day to day advice & discussion about her condition. 

Unfortunately this young lady fell victim to nearing adult transition during the COVID pandemic and therefore didn’t get the same options of regular joint appointments. Luckily with her family knowing the adult team well she felt comfortable coming in & discussing her options for access care & treatment.  

At the end of the day, this is why I love the job I do, because these two conversations have been beneficial to the affected Individual & their parent in providing reassurance about their next steps in life & that we have other treatment options available. I was also able to let her know that the bleeding she was experiencing isn’t normal & we can help to resolve that as well as provide iron supplements to support blood loss until bleeding settles.  

My Brain surgery with the help of Afstylia Factor support from WFH
[email protected] Sanakaranarayanan
I am [email protected] Sanakaranarayanan from Tindivanam, South India hails for lower socio economic group. In my child hood I was taken to various Hospitals for various treatments for my various bleeds and nobody diagnosed me as Hemophilia. I suffered many bleeds like oral bleeds, joint bleeds and muscle bleeds,and I, and at the age of 7 only I am diagnosed as Hemophilia A. I have 1 elder sister and 4 younger sisters and my 3 nephews are affected by Hemophilia A . Before 25 years there was no factor and all the way Plasma was transfused and it was given for all treatment and surgeries also. Later I found that there was a registered society in Madras for Hemophilia. So I and my 3 nephews registered in Madras society and we went for treatment in Madras Society.
Some years later I heard that Dr. P. Nalini, Professor of Pediatrics, JIPMER, Pondicherry (Retd) had started Hemophilia society Pondicherry chapter and I submitted all the documents of myself to Dr. P. Nalini and I became a Life Member of the Pondicherry Hemophilia society. I underwent 2 major surgeries and with the help of Factor from Hemophilia Federation India, New Delhi and also support given by Dr.P. Nalini, which are all Free of Cost. In the year 2018, I had severe fever and I came to JIPMER and there I was diagnosed as Malaria and due to Malaria I had blood clot in my brain and the clot was diagonised by Neuro Surgeon of JIPMER and open surgery was done in JIPMER, which was also Free of Cost , and full Factor support(Afstylia) was given by Hemophilia society Pondicherry chapter obtained from World Federation of Hemophilia, through Hemophilia Federation (India). After my surgery I was supported by Factor for 6 months as prophylaxis and I am fully recovered. In spite of various bleeds and I am fully recovered from IC Bleed ,and I am now normal. My family members express their gratitude to WFH , HFI (India) an Hemophilia society Pondicherry chapter
Thanks to all

E. Sankaranarayanan
M. NO. 53
Hemophilia society Pondicherry chapter

The Haemophilia Association of Mauritius wish you all a Happy World Haemophilia Day 2023. Access for all. Cheers to all our Heroes. 

Rajesh Neelayya

President

Haemophilia Association of Mauritius. 

As hemophilia  caregiver , many positive  stories  are with me, but most exciting  ones are  : life of one child with brain Hemorrhage  is saved  with continuous  and untiring  efforts   of his mother and now that child has normal actovity without any residual disabilty , it is really  most satisfying event in my life as hemophilia  physician and other adult patient came to my care when there was plan to have amputation  of the leg and with personal care   leg is saved .That boy had nailing  a d plating for fracture  without factor support