What are your biggest worries about your future with SCD?

[CalvinHU]

Share your experiences and interact with other members in the comments below!

[Della30]

My biggest worries - hmmm worry leads to stress then a crisis and then one gets caught up in a vicious cycle. There is no cure for it currently, I guess if I can afford to worry it will be QUALITY OF LIFE AND NOT BEING A BURDEN ON LOVED ONES. But SC is unpredictable so although I live in hope and depend hugely on my faith in God. I think everyday is a blessing and even more so if I can go without any SC symptoms. Worry less, live life to the full and as if it is your last because who knows with this dreadful disease.

[CalvinHU in reply to Della30]

Excellent philosophy!

[JJibogu]

My prayer is that technology can advance so much to have a cure for SCD and such cure is affordable. For now it seems prevention is better than cure. Our parents knew little about genetics but we know better. There needs to me more education on how Sickle cell anaemia can be avoided. This will go along way in reducing SCD within the Afro Caribbean population. So also within the Asian population in terms of thalassemia.

[miriuska]

Will there be a long-term future and what quality of life will there be in it?

Other contributors already said it. There is no cure for SCD yet. But it is a fact that advances in medicine have been tremendous for the past 30 years. Information is the key.

Most of the advances discussed for SCD and haemoglobinopathies are for children with specific results and treatments already approved for children/teenagers at NHS level (like bone marrow transplant subsidized by the Government until 18 years of age in Brazil).

Other new medication and genome editing may offer great advances and possibly a cure but when will they be widely available and affordable?

Although it is very important to focus on children because they are the future, life expectancy within adults with SCD has increased tremendously. The oldest person today is around 90 years old which is amazing. What quality of life will we have, how costly will it be (having a proper house to live in, private transportation, an appropriate job, balancing work life and personal life, no health insurance which really covers for everything...)

?

It's also with the adult population that you learn to be able to help manage SCD in the younger population. We are the best advocates and teachers to pass on information and the right message.

Two very important aspects:

1) Getting rid of the misconception that SCD is a disease of black people. The world has changed a lot, people travel a lot more and are getting mixed a bit everywhere. There needs to be more knowledge available to all -users in general and healthcare people.

2) How to ensure you rights and obligations as a patient all over the world. Collaborative work, being part of associations with healthcare people, patients and their families to ensure constant communication and information sharing.

[Feio]

My biggest worries are that as I get older I will not be able to deal with the painful episodes. I also worry that I will become a burden on my family. However I am hopeful that wth more research and clinical studies, one day there will be a reasonably price drug, available to all SCD patients, that will enable us to live our lives to the full. As it is, SC patients with the good medical care available now, we are living longer, having children and generally excelling in our field of work and education. Yes, it can be extremely difficult at times, but we have proved to be very resilient. We continue to copie quite well with the multiple of symptoms we have to deal with, on a daily basis. We must continue to be positive and live our best life!

[Anzy]

My biggest worries are how I will deal with pain as I get older, the idea of taking more medication depresses me. It is a fear of mine, but I try not to let fear of the future distract me from living in the present. Giving up is not something I want to consider. Of course starting a family is also a worry of mine.

[delectablydopecrown]

my other half not being able to accept it or leaving me one day because it gets too difficult for them