Family & Friends of Thalassaemics

[caraiti]

A mother of a Beta Thalassaemia Major thoughts.
Taken from Thalpal

Almost as much as the thalassemia patients themselves, their family members are affected by the disease. 
Parents are often consumed with their child's illness.  The illness requires a lot of physical, mental and emotional energy from caretakers.  As parents are usually thal minors themselves, experiencing mild to moderate symptoms of being carriers, dealing with thalassemia can be very demanding and can take its toll.  Worrying about blood tests,  their organs that we cannot even see, their futures that we cannot predicts (only influence) it seems to be endless. 

A lot of juggling is required in the family with the thal child, other siblings, careers, and family relations.  Raising a family, keeping up with a child's treatment and the latest research can put strains on all relationships within and outside of the immediate family.  Siblings, as they grow, also feel the stress and the worry of having a thal major/intermediate sibling. 

Sometimes families settle into roles where one parent takes on most of the worry and responsibility for the disease - although both parents want what is best for their child - it becomes a routine and a habit for one person to take on everything.  As a thal minor, this parent can become quite run down and weighed down by the responsibilities of  seeking out information and making the difficult decisions.  One parent sometimes has a very hard time delegating responsibility and ends up doing a whole lot by herself/himself.

As thal patients grow and find partners, the spouses and partners are then affected by the thalassemia.  I have heard many times that the well being of a thal patient can improve drastically if they find a supportive partner.  A partner who encourages chelation, proper nutrition and increases the patient's self esteem can make an enormous difference. 

Our priority is our children, but in order to take good care of them and to make the most of the lives we have been given it is important for family members to take care of themselves.  I would love to hear how families of thalassemia patients find balance.  It would be great help for everyone to learn different ways to manage the disease of their loved ones, while being healthy and happy themselves. 

[tan_md]

What you say is very true. A disease is not only affecting the patient in person but also affecting the family and even the society as well. This is why holistic approach in managing a disease is very important. Not only to treat the patient but the family and society as well. Do you think your healthcare providers in New Zealand have achieved that?

[caraiti]

Do you think your healthcare providers in New Zealand have achieved that?

That is a hard question to answer as there are many ways to look at it.
From my personal view as I think of my haematologist and what she has accomplished with me then I would say definitely yes. Dr Blacklock has always identified how important my family's support is for me and she knows just how stressful it was on my parents and sister.

In regards to the rest of the doctors, I am not knowledgable enough to answer.
I do know however that as long as Thalassaemia is not more known, then health care providers would not be able to make more informed choices about our clinical management and how our families make a difference to our wellbeing and vice versa.