21 disabilities under RPWD 2016 – Hemophilia

Today we will talk about Hemophilia, one of the 21 disabilities that are covered under the RPWD ACT 2016.

What is Hemophilia?

Hemophilia is a group of disorders related to blood and cause excessive bleeding and poor blood clotting. The severity of the disorder varies from person to person. Hemophilia is an invisible disability

Symptoms

• A person with Hemophilia bleeds more than other people in case of wounds, cuts, and injuries. Excessive loss of blood due to bleeding can result in long-term and even severe damage to joints.
• Bleeding from the mouth or nose may occur.
• Bleeding from the gastrointestinal tract
• Bleeding from the urinary tract
• Bleeding into the brain or skull
• Increased bleeding after surgery or trauma

Causes and Types

The blood disorders are caused due to defective genes.

There are two specific types known as Hemophilia A and Hemophilia B. There is also a rarer form of the disorder and that is Hemophilia C. Hemophilia A and B are much more common in males as these are caused by a recessive gene X that is found in males.
In simple words, a male with a mutated gene will have hemophilia. A male without hemophilia will not carry the defected gene. The gene however may be passed on to the daughter of the affected man making her the carrier of hemophilia.

Diagnosis

DNA-based tests, clotting factors testing can be used to identify the presence of mutated genes. Prenatal diagnosis is also possible with DNA-based tests.
In some people the disorder may be mild and not very noticeable. While in others the presence of hemophilia can become apparent in first few years of birth or even earlier.

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

Cure and Treatment

There is no cure..There are various types of clotting factors linked to hemophilia that have an impact on the severity of the disorder. The main treatment for severe hemophilia is replacement therapy where the specific clotting factor needed is given to the affected person. This is almost like getting a blood transfusion.

Demand therapy, prophylactic therapy, drugs, pain relievers are some of the other treatment methods used depending on the severity of Hemophilia.

Children with hemophilia can benefit a lot from physiotherapy as it helps them gain physical strength and stamina. Reguslar exercising, activities such as swimming can be taken up to ensure that children are gaining strength.

Bhagyashree Palekar, a parent of child with Hemophilia shared her insight with Newzhook. She said,” parents should be aware of the risks associated with Hemophilia, this will help them remain alert and prepared for emergency situation. Parents can help their children understand the impact of Hemophilia and engage them in activities that are fun and safe.”

Bhagyashree Palekar also recommends Physiotherapy for children with Hemophilia,” Physiotherapy can make the lives of children better over time and should be done regularly.

Life is not easy for people affected by hemophilia. Due to the fear of excessive bleeding, children have to be kept safe while they are young to avoid injuries. This not only affects their physical health but also causes emotional strain.

Due to lack of awareness about hemophilia in India, parents find it hard to understand and accept the medical condition of their children. This is also aggravated due to social stigma, illiteracy and ignorance about the health problems associated with hemophilia.

Another parent Kesar Khan says getting information about hemophilia can be very helpful families. “Once the disorder is identified, treatment and precautions can be taken care of in timely manner.”

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