Awareness

[Dazzpetrov]

This is more like a question for the sickle cell community, especially those living with the condition. My understanding is that there are some 15000 sufferers in the UK. Let's assume that half of that number are children. It still means there are over 7000 adults out there who could engage a bit more and help put sickle cell disease out in the public domain, such that it  would no longer be a closet condition. Ultimately helping generate badly needed awareness. I don't see majority of sufferers doing anything to help generate awareness. Why is that? 

[shankei]

Hi Dazzpetrov

Maybe it's because no two people with Sickle Cell are the same, some people rarely have crisis while others have them far more frequently, and so even among us, our experiences are all different. Maybe it could be because people fear the stigma associated with sickle cell.  I once overheard someone say   "That girl looks like she has sickle cell".  Until now I cannot comprehend what they were trying to get at, What does a person with sickle cell look like??? because I thought we looked as ordinary as everyone else, which is often part of the problem, We may look well,  but we could be in chronic pain!!!  Maybe its because there is a lack of support in our immediate community, if our loved ones, friends, work colleague have difficulties in understanding the nature of our illness, how do we communicate it to others.  I suppose another problem could be not knowing where to start?

I personally think we even struggle to support each other. 

I am a member of another healthunlocked community as i also have another health condition, which is very rare.  I notice great difference between the two communities, but what is most apparent is that the members in the other group engage with each other a lot more than we do.  I often come on here and notice that people post, but often without much response, there are 717 of us in this community, why is it then that between us we can only give a few responses. 

For us to give sickle cell the awareness it needs, the sickle cell community need to do more.  Share our experience, learn from each other and then we can teach.

EACH ONE, TEACH ONE !!

[Dazzpetrov in reply to shankei]

Hi Shankei

Thank you so much for coming on this platform to share your views about my question to the  sickle community. You raised very important points, all of which I agree with and really want to give my views on some of the issues you mentioned. But I think I want to wait a few days to see whether we are going to get anymore views. But I will say this, in my view, there would not be a significant change in the welfare of  sickle cell sufferers until sufferers themselves begin to engage among themselves and with society at large, especially people with influence who can make a difference .

[SCSZoe Partner Sickle Cell Society]

In our experience, some people don't want to publicly "out" themselves as living with sickle cell, because there is still a lot of stigma to the disease. This creates a vicious circle--the stigma continues because people are unwilling to speak out! 

However, we are seeing increasing numbers of people who won't be quiet and do want to share their stories, especially on social media. This is really refreshing to see, especially as it means young people who use social media will see that they are not alone.

Saying all of this, it's not just the responsibility of people living with sickle cell to raise awareness: patients have enough on their plates! This is why it's really important for people who don't have the condition to speak, share and make sure everyone knows about the disease!

[NikiA]

I agree we need to do a lot more to raise awareness of the disease. I'm constantly educating people about SCD on Twitter and Facebook. 

Attitudes don't help as someone else mentioned. The other day I was explaining about SCD to a white lady who wanted to know more about it and a mutual friend who is African, was so dismissive about it, I don't know how I didn't scream at him. He made it sound like people with SCD exaggerate, so take what she's saying with a pinch of salt. 

I had to walk away and told the lady I would talk to her more about it later. The ignorance expressed by some people who unfortunately think they know it all, is beyond believe. 

I wouldn't blame someone with SCD who chooses to keep quiet around such people. It's frustrating enough for me as a mum of an SCD sufferer. 

[Bluebells in reply to NikiA]

I agree! It is ignorance that causes some people to speak apathetically about sickle cell patients. Living with chronic pain is devastating!  It is frustrating when some people think that SC patients crave drugs all the time! Pain affects everything about you and yes when SC patients are in pain they want that pain to go away. Cancer,MS, Lupus, even now Autism seem to get more attention! The sufferers get more empathy! It's time to level the field and give SC PATIENTS the care and concern they deserve!!!!! From a parent of a sickle cell patient!!!

[Bluebells in reply to NikiA]

I 'd like to shove some sickled cells in that African man' s body and see how he makes out when he is in pain!!!!!!

[cazzera]

Hi there, it is very very very frustrating for us sickle cell sufferers, and I too have experienced the negativity towards my condition. I have not been on this forum for long but I do find it useful at times. To answer your questions about educating about sickle cell. It is a very long process and obsticles along the way but I am trying to set up a business where I am passionate about being a motivational speaker on sickle cell, where I want to educate schools, colleges etc and I would go as far as saying anyone who is in public health/services need to be educated about this dibiltating condition. I eventually want to do documentaries (where many of you may want to be involved) in the hope that health professionals and communities will know what the condition is and how it is treated, depending on the individual. I have received letters from health professionals and House of Commons who are in support of this.  FINGERS CROSSED GUYS!

[Stephsteph92]

As mentioned above i guess everyone has a different experience of their condition and how others treat them.

I continue to be passionate about raising awareness for SCD as well as trying to encourage more ethnic minority groups to give more blood.

It seems there are definitely a group of people such as Cazzera who want to speak up and encourage and support others but sometimes don't know how or are put off by the efforts this may take and that in itself becomes an obstacle/challenge which can prove stressful/tiring.

I also feel there are probably a lot of people who on this forum may read a post and replies and if felt its been answered will not comment (as i have done on few occassions).

And it may be a practicality issue but i know for me even though i am a confident user of IT for a while i struggled to get onto this forum and little tedious things like forgetting my login will put me off on some days but managed to find a way around all of that.

Last point i'll make really is also about what we are portraying about SCD i feel its very important people who are comfortable to and expressing how they really feel, both physically and emotionally and its also about supporting those who may not feel so comfortable to. It can be very lonely and living with an invisible illness along with the pain can truly have an effect but its about supporting each other to try and encourage one another. My motto i go by and aim to be able to support others in this and into gaining independence is: yes i have SCD and it is a big part of my life but it does not define who i am and i truly think if you hold onto that though it has times when it has been challenged it has kept me going.

[ciannas-smile]

Hi Dazzpetrov,

My daughter has SS and 4 years ago I decided to start the charity Cianna's Smile to raise awareness about Sickle Cell in our community.

We are slowly but surely making a difference and raising much needed awareness about Sickle Cell.

We have notice that recently more people are campaigning and raising awareness through social media platforms because like us they are determined to help raise awareness.

We have started a campaign and aim to put up literature in all GP practices in the Thames Valley area to raise awareness and educate the public. We are doing a presentation tomorrow at our local hospital to help improve the experience of patients with Sickle Cell when visiting the hospital and we regularly organise community awareness events and do presentations at schools and colleges to educate staff and pupils.

If you would like to know more about what we do please feel free to get in touch and we would love to share more about our journey with you.

Best wishes

Hayley