Last week, Haemochromatosis UK (HUK) Trustee Lisa Flude and wonderful volunteer Zara Woods represented the HUK stand at the British Society for Haematology (BSH) Conference in Glasgow.
The conference was attended by hundreds of haematologists, nurses and students. Lisa and Zara were able to speak to attendees about haemochromatosis (GH) and specifically about the BSH Clinical Guidelines.
The BSH Conference also included Professor Ted Fitzsimons, lead authour of the guidelines, presenting about haemochromatosis and the clinical guidelines, he spoke to a wide range of professionals and worked towards a greater uptake and adherence to the recommendations in the guidelines.
Lisa Flude commented that she “was proud of our presence at the event, as we received nothing but positive feedback from conference attendees. We were complimented on our website, as often haematologists stated they referred to our materials whenever they would see a new GH patient.”
She added that “haematologists commented that they were seeing an increase in GH patients, and so they engaged with our stand, with attendees taking information and materials back for their teams. Events such as the BSH Conference are important for HUK to attend, especially as we were promoting the guidelines”.
Zara Woods commented that, “it was great to be at the Annual Scientific Meeting of the British Society for Haematology representing Haemochromatosis UK. There were lots of great conversations at the event highlighting that the awareness and identification of Haemochromatosis is definitely on the rise, and that there’s lots of focus on making sure that the treatment received is conducted in line with the guidelines published in 2018. We met with established supporters of HUK and also made new connections at the event which we’ll be following up on to ensure that Haemochromatosis continues to receive the attention and support it deserves.
She added, “it was also a great opportunity to hear first-hand from Haematologists and Nurses how much the HUK resources provided benefit patients, and also make sure that any that aren’t using them yet are going to be getting some in the post shortly!”
Events such as the BSH Conference often require great commitment in terms of volunteers.
When asked why Zara volunteers for HUK, she commented, “as a C282Y Homozygote I’m really keen to ensure that awareness and treatment of this genetic condition is a high priority within the health care profession – driving early diagnosis and consistent treatment is a must. I’m also passionate about providing clear and insightful information that enables us all to make more informed lifestyle choices – HUK do a brilliant job of this so I want to promote this far and wide. I’m very lucky to have been diagnosed early in my life without lasting impacts, but my family has been plagued by related illnesses for generations without the gene types being identified. I’m determined to ensure that through identification and treatment future generations will be able to live in their best health so they can enjoy life to the max.”
Haemochromatosis/GH is a genetic disorder causing the body to absorb excessive iron from the diet. Characterised by joint pain and disease, chronic fatigue and weakness, cognitive and psychological difficulties, sexual health issues, skin problems, abnormal liver function, diabetes, and cardiomyopathy. Iron overload can be fatal. It is usually easily treated if diagnosed early.
If you believe you have haemochromatosis or any other condition, please talk to your GP.