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This website is intended for an international audience, excluding the United States, Canada and France

How much information do my family and friends need?

How much information you give your family or friends depends also on how ready you are to give out information as well as how much they want or are capable of processing at the time.

Some family or friends may want to know everything while others may not. Some may understand that you have a serious, potentially life-long condition even though you look fine and want to be there for you when you need them.

What is important is that you talk with them, find out what they are going though as well so they can be there to support you.

What should you say about your diagnosis?

Describing where the pituitary gland is and what it normally does can be an important piece of information that helps your family or friends understand the seriousness of your condition.

Pass on factual information that your healthcare team give to you so your family and friends can learn about the condition with you. Although the pituitary gland is close to the brain it is not part of the brain, so make that clear as it is worrying for anyone to hear the words ‘brain’ and ‘tumour’ in the same sentence.

Let them know that acromegaly is treatable and the options that you have to consider. Discuss the possible long-term effects that your healthcare team has told you, or take your partner or close friend with your to your appointments to hear information first hand to put both your minds at ease.

Talk about the consequences of your condition or its treatment. For example, can you still have children? Yes, you can, although this depends on your age and general health status. Although acromegaly can affect fertility, getting pregnant if you are a woman or making your partner pregnant if you are a man is often still possible before and after treatment. Talk to your doctor if you would like further information about your fertility or becoming pregnant if you have been diagnosed with acromegaly.

Try not to shut people out. It is a natural coping mechanism to only give out the bare minimum of information, but the more you can share, the more you will have people there to support you.

“My way to deal with my diagnosis was to try to protect my family”

Maria, living with acromegaly

What about talking to children?

If you have children then you instinct may be to try to protect them and only give them very general information about your health.

How much your children can understand of course depends on their age and also how much you know they can process. That said, do not under estimate how much your children may want to know or how much that they have understood.

Even with the best information being given the thought of a parent being ill can be very traumatic for a young person.

Having another adult that knows about your condition, such as a friend or schoolteacher, may be helpful in case you are not available at the time to comfort them.

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Practical tips and tools

Read practical tips to help make your life with acromegaly easier, including tips from others living with the condition

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Support groups

Find an acromegaly patient support group in your country to find out about local activities and events that you may be able to attend

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Learn about acromegaly

Learn about acromegaly including what causes this slowly evolving condition, and the early symptoms and signs

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Ipsen
Please always consult a healthcare professional if you require healthcare advice or if you have any specific concerns regarding your acromegaly, its treatment or side effects. The information provided here is not intended to replace professional advice. This website has been developed by Ipsen in collaboration with those living with acromegaly and the healthcare professionals who care for them. Ipsen would like to thank everyone for their valuable insights and stories. All names used on this website are not necessarily real names. Visit our website for more information about us, or to contact us directly. Website design and development by Kanga Health Ltd. Website reference SOM-ALL-000556