A salute to the silent warriors - Caregivers of Thalassemia patients!

If you have never heard the word Thalassemia before, it is good news. Those who have seen some of their near and dear ones go through the illness may even tell - you are lucky!

The prevalence of Thalassemia in India is 4% - which translates to almost 5 crore individuals at risk of the illness, many of whom will require lifelong blood transfusions to just survive. Just imagine what the child and the parents must be going through dealing with the illness and its complications. The best way to deal with it is to have knowledge about the illness and its treatment and most importantly seek support from experts - haematologists and mental health workers to live a life that is fulfilling.

Thalassemia is an inherited illness of the blood, the oxygen carrying capacity of blood decreases in it. It affects the child as oxygen is what we live on, the body compensates for this reduced efficiency of blood cells to carry oxygen by producing more blood cells - causing abnormality in face appearance and osteoporosis.

The child’s growth is affected, gets fatigued easily, abdomen is enlarged, dark coloured urine and pale or yellowish skin.

Treatment depends on severity of the illness and includes blood transfusion, iron chelation and bone marrow transplantation. A haematologist would be the best person to guide you through this.

Often the illness can be emotionally draining for the patient and the caregivers. Fear, anxiety and depression are common.

Some of the issues faced are

1. Repeated trips to the past with guilt or at times blame for situations that could have been avoided - missed prenatal test and diagnosis, missed picking up the illness early. This can be very exhausting and a fruitless exercise when it comes to dealing with the illness.
2. Taking care of the patient involves frequent trips to hospitals, often from far off places. Dealing with non-cooperation of young children to injections and infusions, handling complications, infections. To add to this is the constant comparison with other children and answering awkward questions regarding the lack of growth.
3.  Keep worrying about treatment - getting blood regularly, searching for a stem cell donor for marrow transplant, financial and logistic issues for repeated interventions.
4. Psychological issues in parents are due to treatment issues, seeing a child who is upset, lagging in growth, weak physically and immunologically. A diagnosis of thalassemia disturbs the equilibrium of a household, often causing stress and strain and at times making relationships tense between the parents.
5. There is often a stigma around the illness - leading to parents not disclosing the diagnosis and eventually not having people around to support them when a need arises. People are ill informed and often talk from there, blame parents.
6. Awareness of this illness is often lacking in the society and even in doctors at times, leading to scarcity of support for the patients and caregivers.

A very important element while talking about thalassemia is prenatal testing. All couples considering conceiving a child should have a work up done to assess their thalassemia carrier status, your gynaecologist will help you with it. All said and done, prevention is better than cure.

We at, The Beautiful Mind, are mindful of the commitment and dedication of caregivers dealing with patients having thalassemia and would like to acknowledge them for the same.

For any kind of psychological support or help with emotions, do feel free to reach out to us. We will feel proud to support you in your endeavour to give your child a life he or she enjoys living!