World Hemophilia Day 2019 aims for outreach & identification
April 15, 2019
April 17 is observed as World Hemophilia Day, it is also the birthday of Frank Schnabel, founder of World Federation of Hemophilia.
Hemophilia is an invisible disability and is a group of disorders related to blood. Severity of the disorders varies from person to person and causes excessive bleeding and poor blood clotting.
Hemophilia is one of the 21 disabilities that are covered under the RPWD ACT 2016.
People with hemophilia bleed more than other people when they get injured and it results in mild to severe health issues. Haemophilia occurs due to defective genes and currently there is no cure for the condition.
Excessive bleeding from cuts, injuries, pain joint swelling, nose bleeds are some signs of hemophilia. Replacement therapy, demand therapy, prophylactic therapy, pain relievers, physiotherapy are some medical options that can provide relief to affected people.
Most people suffer in silence due to lack of awareness and invisibility if the disorders. People are also affected due to social stigma and lack of understanding among others.
There is a major lack of awareness in India about hemophilia and we are working to overcome this. It is crucial that parents get timely info about hemophilia so that they can handle their lives in a better way and get the best help for their children. Geeta Gadkar, Secretary Hemophilia Society, Thane
Hemophilia Society of Maharashtra has been working to spread awareness about hemophilia and its impact on the lives of people.
Many patients and families have received the much needed support through the society. Parents are able to help their children better when they understand the effects of hemophilia.
As part of the World Hemophilia Day celebrations, Hemophilia Society of Maharashtra, Thane Chapter is also organizing an event. The theme of World Hemophilia Day 2019 is ‘Outreach & Identification’. The aim is to create awareness and encourage people to seek help.
Kesar Khan is a parent of child with hemophilia and says,”Awareness about hemophilia as an invisible disability is important to bring about a positive change in the lives of people affected by it.”
Due to ignorance and shortage of information, most people tend to discriminate against those with Hemophilia. The physical stress of this medical condition and the mental trauma due to stigma make lives challenging for people with Hemophilia and their families.
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