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.
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.
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.
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.
4- http://www.hemophilia.in/
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 !
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