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Submitted by Pankajsethi on 1 July 2018
Pankaj Sethi a thalassemia major patient, wearing a green shirt on a walking/jogging track

Pankaj Sethi, 31, a thalassemia major patient and founder member of a support group, Youth Thalassemic Alliance (YTA), shares some of the psychosocial issues that surface during puberty for a young teen with thalassemia.

That people with thalassemia require regular blood transfusions is well known. What needs greater attention is the psychosocial issues surrounding the disorder. Just as life becomes turbulent for an adolescent and young adult, the challenges for a teen with thalassemia gets compounded in many unique ways.

One of the biggest psychological complications or setbacks arises due to hormone imbalance. The hormonal system of the body gets adversely impacted because of receiving regular blood transfusion. As puberty kicks in, these hormones become crucial for normal growth and development. But for patients with thalassemia, there aren’t enough hormones for proper and timely maturation.   

Stunted growth

Physical growth parameters such as height and weight, fail to measure up to normal expectations. People with thalassemia are generally underweight and short in stature, significantly below the average height. Stunted growth is present in nearly 50 per cent of patients due to insufficient growth hormones.

Puberty is a phase of overwhelming change in the body, but when young girls and boys with thalassemia miss out on these milestones, it causes immense anxiety and distress. 

Boys, in particular, feel ‘underdeveloped’ when they compare themselves to other children of their age. By the time a boy is 14/15 years, there are tremendous changes happening. He grows bigger in size, his voice gets deeper, and hair starts sprouting everywhere, but for a teenager with thalassemia these bio metamorphoses appear alien. For many of them there is no sign of beard or moustache even when they reach college. Their voice too remains small and thin. 

Similarly, for girls…growth spurts are slow and low. Their body development is poor. Sometimes they do not get their monthly periods even at 18/19. When all other girls of her age are talking about it, girls with thalassemia appear clueless about these developments. 

What is worse is that physical differences at this age are perceived as idiosyncrasies among friends. This leads to bullying and verbal taunts. ‘Oh you haven’t got a moustache! You don’t have hair on your arms!’ are common jibes. These things may not be a big deal for some people, but a kid with thalassemia, it can be very disturbing psychologically.

I was mocked and bullied

I have gone through it myself. When I was in the 7/8 Std (grade), my friends were bigger in size than me. I used to look like one small tiny guy. I used to get cornered all the time. It would make me angry sometimes leading to arguments and fights. But my body was not that strong as per my age. The stronger guys would bully and hit me, but I was not able to defend myself. I was not able to protect myself. That used to hurt. It used to hurt that was not able to stand for myself because I didn’t have that energy or I didn’t have that power to protect myself or stand in front of that person.

I remember when I used to learn swimming, I was in the ninth grade. I didn’t have hair on my hands and legs. And kids of 14/15 years start getting hair. So the class would mock me. When we would go the changing room, they would tease me that I had body of a girl or a child. That bothered me.  
In junior college, the other guys would come and pull my cheek and say that I was a cute kid, as I didn’t have moustache or beard. 

Growth Hormone Therapy

Finally, at 18 I went for growth hormone therapy which brought about miraculous changes in me. I shot up from a height of 4’7 inches to 5’9 inches in a span of four years. My voice that was squeaky earlier became nice and manly. My weight increased substantially. And, what was most wonderful was I began to get body hair, something I had been pining for long. Now I felt normal. 

PatientsEngage Advisory: We found only one research of one year of rhGH treatment on 10 pre-pubertal children with beta-thalassemia major (age range 7.10-12.03 yr) with normal GH response to provocative stimuli. The research demonstrated that GH treatment of thalassemic children with normal GH reserve and low serum IGF-I concentrations with supraphysiological doses of rhGH for one year can cause a significant increase in serum IGF-I levels and growth velocity.  But it remains to be elucidated whether long-term administration will affect the final height. Also other research is in progress to understand the other effects of administration of growth hormone therapy.

Puberty – a period of anxiety

For young boys and girls with thalassemia, puberty can bring in a high level of anxiety, consciousness and inferiority complex which often goes unaddressed. We come from a traditional Indian background. There is a lot of hesitation to express yourself while growing up. The dialogue between young adults and parents, even under normal circumstances, is not the healthiest.  Parents are not comfortable talking to a boy or girl about their adulthood. The kids are not comfortable about discussing these issues with their parents.

Youth Thalassemic Alliance (YTA) 

One of the goals at Youth Thalassemic Alliance, the support group for thalassemia, is to fill this bio-psycho-social void that is leaving many in our community traumatized. We want to reach out to them and make them understand. We want to counsel them. We want to make them feel that somebody is listening to them and is ready to solve their issues. We have regular meetings, workshops and seminars, some of them are only for patients and organised by patients; there no parents, no NGOs, no doctors, no non-thalassemic person.  

Click on the pic below to join the group 

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We work on building a positive outlook and better adjustment for youth with thalassemia. Now we have a Whatsapp (91-9768004545) group with nearly 200 patients as members. We have a separate group for parents. It is a good platform to network, connect and exchange information.