London Aug 03 (BAN/SL) A father Nirav Gudhka, of a 4 year old boy called Veer is appealing for people to come forward for stem cell donor in the hope to find a donor for his 4 year old son.
Nirav said “I wanted to draw your attention to a public issue, that is impacting my family directly. We are looking for a stem cell donor for my son, who is now 4 years old. He has a very rare genetic disorder called Fanconi Anaemia. The consequence of this is that his bone marrow is not functioning properly, and so his blood counts are dropping. He needs to have a stem cell transplant in the near future to resolve this issue.
A good matching stem cell donor is very difficult to find for most transplant patients. This is because matching is based on a total of 10 or 12 factors. Matching is heavily influenced by ethnicity, and so the demographics of available donors has a huge impact on how easily an individual will find a match. For a Caucasian, the chances of finding a perfect match are currently 69% on average, while for a person of BAME origin the chances drop to a shocking 20%. The latter is simply down to a very low percentage of BAME donors globally (note that a donor match can come from anywhere in the world). However, both of these stats can be lifted significantly, if more people across all ethnicities were to come forward and register as donors. Another shocking statistic is that only 2% of the population is registered (vs 14% in germany). This is primarily due to a lack of awareness across the population.
Another factor that needs to be understood is how easy both registering and even donating are. Registering involves only a simple cheek swab which you can just do at home. No blood tests required. And then in case you are called on as a match, donating in most cases is very similar to giving blood. In only 10% of cases will a donor need to donate via a needle to take the stem cells directly from the hip bone. This is done under general anaesthetic, but is relatively easy, especially when compared to other types of transplant where donations are much more invasive. From all angles, the burden is very small when compared to the rare opportunity to save a life.
After finding out that our son does not have a matching donor, and learning all of the above, we have kicked off a campaign to encourage more people to step forward and register as stem cell donors. We have focused our attention on the South Asian population, since this is where we are most likely to find our match, however, we would love for all ethnicities to hear our appeal, and take action. Although we have found ourselves in an unfavourable scenario, the opportunity we have to make a real difference in society is something we are genuinely relishing. We are finding that once people come to learn all of the above stats and facts, they are open to registering. So the challenge is mostly just raising awareness.
The problem that has befallen on us, is one that can end up on anyone’s doorstep, hence why I mentioned at the beginning that this is a public issue. Our hope is that people take note of this appeal and take action, such that we can build up the global registers to a level that others in the future do not need to campaign like us to find their match.
I hope to be able to draw attention to this appeal amongst Ford employees, in the hope that they can take up the call to action, and also spread the word amongst their own networks.
We have set up an appeal website www.helpveernow.org to make it easy for people to get information on how to register, and what being a donor involves. On there you can find a video that explains the registration and donation process in a very simple way”.
Note that over the course of this year, this campaign has signed up over 7000 new potential lifesaver across the UK, India and USA. It has also raised over £10,000 for the stem cell register charities. You can follow his campaign @helpveernow on Facebook, Instagram and Twitter.
Can you help the British Asia team will become stem cell donors will you?