No matter where in the world that you are based, there are many support networks to help understand and deal with living with Cushing’s.
Knowing that there are support groups can really make a difference, especially when you are initially diagnosed.
I am incredibly lucky knowing that I have an amazing support network of family and friends, most of which learned more about Cushing’s than a lot of General Practitioners do! I can’t even begin to thank them enough.
However, sometimes, despite having support from family and friends, it is always a relief to speak to someone that has gone through or is going through the same journey as you. Unless you have suffered from something like this, no one can understand what you’re going through – they can try to, but it’s difficult sometimes for both you and them.
There are many Cushing’s support groups on social media platforms such as Facebook and some very useful websites that I urge patients to take a look at. I am also hoping that this website can be helpful with coming to terms with a diagnosis and the journey from there.
Two websites that I found very useful were:
If you are based in the UK and your Cushing’s is caused by a pituitary tumour, I strongly recommend The Pituitary Foundation, they’re a small charity based in Bristol and when I was first coming to terms with my diagnosis, I downloaded a plethora of their online booklets. They also have a specialised Endocrine Nurse helpline – this is something that I urge you to take advantage of if you have any questions or you simply want to chat. Additionally, you can meet others just like you as they hold monthly support meetings with patients up and down the country.
My husband and I are now Ambassadors for The Pituitary Foundation and we are trying our absolute best to raise vital funds an much needed awareness for this charity. They receive 0 Government funding, so solely rely on kind donations. If you’re willing to spare a few £, or wish to get involved in a fundraising activity, please do contact them.
If I have any readers from Yorkshire, this is where Daniel and I are based and we are always on the lookout for extra pairs of hands to help us out with our fundraisers.
You can find their website & JustGiving links here: