Good afternoon
My Mum has juat been diagnosed with EDC after 2 years of deteriorating health. Just reaching to know about other’s journeys, treatment and what to expect in the future.
I wasnt aware it was a blood cancer until a little online research. The diagnosis is very new and she hasnt yet had an appointment with haematology so we are a little in the dark about everything.
Thank you for reading.
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Hi @MABEL0303
A big welcome to our forum.
I’m so sorry to hear about your Mum, and can only imagine what a worry this has been for you over the last 2 years. Apologies in advance if I’ve got this wrong, but do you mean Erdheim-Chester disease (ECD)?
If so, I wanted to share this information from our website: Blood cancer types explained | Blood Cancer UK There are helpful links there for any new diagnosis of a blood cancer as well as some links to other charities that have more information about it.
It is a rare form of blood cancer, so there may not be someone with the same diagnosis here, but I’m sure you will find this forum a supportive place. Having a new diagnosis can be so difficult, especially taking in all the new information, so take it one step at a time and do reach out for support here and via our support line if you ever need it. More details here: Blood cancer information and support by phone and email | Blood Cancer UK
Take good care of yourself.
Kind regards,
Ali
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A great big welcome @MABEL0303 by the sounds of it you and your mum have really gone through it over the last 2 years.
You are now part of our forum family and I have found no matter what our diagnosis is or relationship to the patient that many of us share similar fears, thoughts and practicalities/
@Ali_BloodCancerUK has given you a brilliant response.
Now will give you both the opportunity to write down all the fears. questions and practicalities for her first appointment.
Perhaps both be pleasantly assertive and ask for responses in plain English, no questions are off limits and it looks as if you have some questions already. They will know your mum’s medical history.
Please be kind to yourselves and look after yourself as much as you do your mum.
Please do keep posting how you are both doing.
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