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Living with Haemophilia

congenital haemophilia

[1]Haemophilia is an X linked recessive disorder in which an inherited deficiency of blood coagulation factors results in prolonged and variable episodes of bleeding after any trauma. The bleeding may occur into body cavities, soft tissues, muscles, joints, subcutaneously, intraocularly, intracranial, into the oropharyngeal cavity or after tooth extraction. It may persist for days or weeks depending upon the severity of the deficiency.

Normally, the haemostatic mechanism in the body curtails blood loss by initiating a cascade of precisely integrated biochemical events involving the coagulation factors, collagen, platelets and derivatives of the blood vessel wall. An inherited defect leads to deficiency of one or more factors especially factor eight and nine referred to as haemophilia A and B respectively. Due to the deficiency, the precise mechanism of clot manufacture and retraction is disrupted and the usual sequence of platelet adhesion, activation, secretion, aggregation and fibrin incorporation is inadequately propagated. What results is inability to stop the haemorrhage and prolonged bleeding.

A visit to a haemophilia centre at Nashik, India unravelled the sorry state of affairs of the sufferers. Previously thought to be a disease of the royals, haemophilia has been observed to be prevalent amongst the economically deprived sections of society. Detected early in life, the hapless victims are usually young males, although rarely females too may be affected. The general trend is of females being carriers than victims as it is exclusively an X linked genetic disorder.

The physical effects of haemophilia are manifold. A typical case is of prolonged bleeding from the umbilical cord in a neonate or of extensive coagulated intracranial bleeding or haemorrhage after circumcision. There was a lady who lost her elder son to haemophilia because she did not have the money to infuse cryoprecipitate/factor to her son who had an intracerebral haematoma. And now she has her second son also diagnosed with haemophilia. Thankfully, subsequent to Homoeopathic treatment, his requirement of the factor has minimised to a major extent and he remains in good health despite his disability!

We met a young girl, 16 years old, a rare example of a female with haemophilia. Her father, a pharmacist, literally broke down in front of us, saying that this dreaded disease has stolen their peace and he hopes that even his enemies should not have the misfortune of suffering from it! To watch a robust, middle aged man break down so was a heart wrenching sight. He said that when his daughter was diagnosed with haemophilia, it felt as if their world had crashed. Finances were not much of a problem for him but being a pharmacist, he knew of the side-effects of frequent transfusions and what it means to be a haemophiliac. He said the social repercussions were unimaginable. Their primary concern however was that she was on the brink of womanhood and there was a high risk of extreme blood loss every month during her menstrual cycle. With homoeopathy, she has shown marvellous improvement, both in terms of having a stable menstrual cycle and in terms of her overall health and resistance to disease.

A boy arrived carried by his father and on closer inspection we realised the boy’s right knee was grossly swollen. Spontaneous haemorrhage into joints after minor trauma is commonly seen in such patients and this results eventually in erosion of the articular cartilage, fibrosis and joint ankylosis. Aspiration may seem an easy option to prevent complications, however repeated episodes of bleeding are very common as testified by a middle-aged man who had pronounced joint deformities secondary to ankylosis. He volunteered that since the age of two years he was diagnosed with haemophilia but couldn’t do much about it as frequent factor transfusion was impossible due to his poor financial status. By the time he started Homoeopathy, the damage was done, but now he doesn’t have such frequent episodes of bleeding or requirement of factor.

The risk of contracting hepatitis C virus or HIV due to repeated transfusion of factors is a serious health risk for such patients. Extensive research by the team of dedicated Homoeopaths indicated that it took at least twelve minutes after factor infusion to stop the bleeding. Many times, a single infusion was not enough and repeated administration was required to control the bleeding. At times it took hours and even days! And for the patient, till then there was no respite. Also there was nothing to prevent further occurrence of such episodes. What conventional medicine could do was give symptomatic treatment, often at huge costs to the patient. This prompted the team to see what Homoeopathy had to offer in such genetic disorders. After years of research it was concluded that it had a major role to play in prophylactic and therapeutic management of haemophilia. Prophylaxis in terms of preventing frequent bleeding episodes was evident as recounted by all the patients treated. Where they used to bleed at least once a month, the patients recalled that they had not bled for many months. A few of them even said that in the last 7 years , they had bleeding episodes only twice and then too it was totally controlled with homoeopathic medicines. Records indicated that homoeopathic medicines were able to stop bleeding within 4 – 5 minutes!

Apart from the physical effects of this disease, was the associated mental anguish and social stigma. A lawyer related his ordeal where his family still looks down upon him fearing he has a dreaded disease. His wife, children and parents even wish that he were dead and don’t flinch from telling him so. They treat him as an outcaste and he says that if it were not for the good homoeopathic doctor, half of the patients here today would have committed suicide.

The social and emotional aspects of haemophilia are little considered. One can imagine the agony of the patient who knows he has an incurable disease which he can pass on from one generation to the next if he gets married and begets children! People shun them and families blame them and it is difficult for them to search for a purpose in life, aware as they are, of their disability, helplessness and dependency!

This article is an effort to create awareness about haemophilia and the pivotal role played by Homoeopathy in treating it successfully as demonstrated by ample evidence from patients in the past few years. Not only has there been a drastic reduction in recurrence of bleeding episodes, but the Simillimum has equipped the patient to deal with the disorder at all levels – physically, mentally, emotionally, in short, holistically!

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