How has sickle cell disease impacted your family life? How much do friends and family understand about sickle cell disease?

[CalvinHU]

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

Research questions will resume on Monday, enjoy your weekend!

[JJibogu]

Being SC means my health condition has not really impacted on my family life that much however my health condition did make me find out about my partners genotype before getting married, this is very important for the young ones to consider before the relationship gets too far. My wife understands to a great extent once I have a crisis and she is on hand to support. Being in the UK is much better compared to being in a tropical climate where there is much heat, malaria, typhoid and the rest. I remember having to take anti-malaria medication to prevent myself fallen prey to Malaria.

As a young child fallen prey to malaria used to be a very hurrible experience.

On friends don't really have much of them to know the impact of my health condition on them. For me my family is my greatest asset and support.

[miriuska]

Where do I start?

Family - It changes everything. My family (parents and siblings) learned on the go from the moment I was diagnosed with SCD and there was the need for a family study to know who had what. There was little information at the time. It was the late 60's. They corresponded with reference hospitals in London, Canada and South Africa and it was a steep learning curve and trial and error for my parents and the doctors and carers. A lot of money was invested in private doctors to investigate multiple possibilities and private schools to allow for a high number of absences, studying and even taking tests from home.

Alternative medicines like acupuncture and homeopathy were also part of the picture and did contribute massively to lower doses of medication and a more preventive approach (rather than reactive). That was quite expensive and it was far away from home but it was important.

Family support is THE MOST IMPORTANT THING. I don't think my siblings realized fully what it meant until I already was an adult and both my parents died but they helped ensure I dressed and ate properly, drank enough, did not overdo in any shape of form (maybe a bit too much) and explained to colleagues and friends that I was special. They also helped with tutoring to cover for the missed classes and endless hours of entertainment.

My nephews and nieces learned on the job watching my day to day life, the crisis, the hospital admissions, the limitations to do a lot of stuff but also conquering my goals, my successes. I educated them on what it was and the importance of knowing if they have the trait and what they should do when they think about having a family. When they need they come to me for more information or for referral to a specialist.

Friends - Social interaction is not easy as you tend to be shy and therefore not very popular. You have special needs and can't do the same as everyone else and kids/teenagers can be cruel. It's a good filter for friends as you don't have a lot but the ones you have are usually for life. It's also a learning curve for them. You need to explain and learn to rely on them as well as being a wider support network.

Even if they are not your friends, it is important that you also educate your employers and co-workers and rely on them. They are also part of your wider support network and need to know who to contact in case of emergency.

Spouse - it's a challenge. The first hurdle is telling them and taking the genetic tests to know their family history. They need to be willing to invest in you, good times and bad times (it is really for better and for worse, in sickness and in health) and be there always. And you need to trust and explain as often as necessary. You need to decide together if you want to have children or not and respect that decision. Life will never be the same. Your plans may change from one moment to the next. You should always have some savings to allow for bad times. In time, they will become your best advocate and ambassador.

It is massively important that every one in your closer support circle doesn't treat you as a helpless person with a severe disability unable to do most things. They are there in the good times and the bad times to help you recover, not go down and persevere. Yes, it is very difficult. Sometimes you really can't but you are as good as anyone else and impossible is nothing. You just have to prepare appropriately and find your way to do it. Sometimes you have to admit that you can't do it and move on but the world is out there, yours to conquer and be part of and you have an vitalrole to play helping yourself, helping others, learning and educating others, raising awareness, spreading the word.

[Della30]

Sickle cell has impacted immensely on family life. The one person who had all the knowledge, education and understanding was my dear mum who unfortunately passed away. I explained my condition to my ex husband and made sure he was sickle negative before we had my son, but his mum used SC to part us - a blessing though as the stress was too much. My core support is my sister and my son who understand and are there for me a 100%. I don't really have friends, the so called friends expectation and understanding of the condition is frugal. I tend not to depend on friends for support because I don't want to burden them and also do not want to didappointed. Getting people to understand the ups and downs of SC and the impact it has on your life and the friendship is hard work.

[Anzy]

Sickle-cell has woven itself into every corner of my life, my personality has been shaped not defined though by it. The difference is important to distinguish because when I was younger it felt like I simply lived from one crisis to another. My family have exceptionally supportive when it comes to the physical and mental toll of having such a chronic live long disease. So have my friends, explaining and being open with them about how I feel has been crucial.

[delectablydopecrown]

I have a sister who also has it which is nice because I'm not alone and she understands what I go through and she helps me all the time, my parents are really supportive but sometimes I feel like they don't understand how hard it can be mentally and physically, I have friends who know about it but I don't feel they fully get it, it's hard to explain and I think people don't want to hear you're in pain all the time or that you're sad but that's how it is a lot of the time, I feel like I've started talking about what I'm going through a bit less because no one understands