More Quotes and Articles Here from Sickle Cell 101 to encourage and motivate anyone living with this disease.
Generally, with all people, sexual development accompanies bone age, so as we grow and mature, our sexual development grows along with us. SCA patients on the other hand experience delays in their sexual development as a result of delayed bone maturation due to the many clinical manifestations of their disease. Sexuality in human beings is present in all stages of life - from relationships with their social environment, emotions, feelings reproduction and the pursuit of personal pleasure and this is not something that people with SCA do not experience by any means. The nature of their condition however leaves much to be considered when discussing this topic.
Previous posts have already discussed issues like Priapism and the risk of pregnancy in men and women respectively but it is also important to note that delayed development in the puberty stage is also a major source of stress for SC patients. Because of their condition, puberty does not always happen at the same time as their peers and this often leads to emotional problems and/or challenges due to this stage being a time in their lives when social acceptance is so important. Sexuality involves emotions like affection, pleasure and fulfillment and although adults with SC will have similar experiences like their healthy counterparts, they often report issues like discrimination and feelings of inferiority owing to their disease because of the fear of a crisis or painful episode. Much of their challenges stem from the belief that partners will not be understanding of their health limitations and that it may lead to discrimination against them. Discrimination from sexual partners can be emotionally damaging and this often leads them to isolate themselves from social settings.
Depending on the cultural backgrounds of SCA patients, ignorance on this topic and its consequences may be a factor to consider as sex and sexuality may be taboo topics that carry along unfounded myths and theories not based on scientific facts. This is where genetic counselling becomes more necessary to discuss and educate on the associated risks involving pregnancies and the danger of priapism if not promptly treated. The African and maybe hispanic cultures for example where the topic of sex and sexuality is not one that is freely talked about, would benefit immensely from this type of counselling. Of course there are other issues like Erectile Dysfunction that should also be addressed in adult males living with SCA since it is known to affect one's confidence among peers.
Clearly the struggles faced with Sickle Cell Anemia patients are always physical, psychological and emotional and their health care needs must always be addressed by their medical team to minimize their pain and suffering.