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Helping others to understand acromegaly

The start of your acromegaly journey may be an emotional and difficult time for you, but remember that it may also be a challenging time for your partner and other family members who want to be there to support you as well.

This page has some suggestions on how to help those around you understand acromegaly and how it affects you, and what they can do to support you.

Support groups

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

 

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 they want to be there for you when you need them.

What is important is that you talk with them and 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 gives 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 your healthcare team has told you about, or take your partner or close friend with you to your appointments so they can hear information first hand.

Talk about the consequences of your condition. 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. 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.

What about talking to children?

If you have children, then your 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 underestimate how much your children may want to know or how much they have understood.

Even with the best information provided, 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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 Living with acromegaly

Acromegaly is a long-term condition. Here you can find information about how people with acromegaly have adapted to their diagnosis and tips for living with the condition.

Find the support you need

Practical tips and tools

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

Support groups

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

Learn about acromegaly

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

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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 www.ipsen.ca for more information about us.


Consultez toujours un professionnel de la santé lorsque vous avez besoin de conseils en matière de soins de santé ou lorsque vous avez des préoccupations particulières concernant l’acromégalie, sa prise en charge ou ses effets secondaires. Les renseignements fournis ici ne doivent pas remplacer les conseils offerts par un professionnel. Ce site Web a été conçu par Ipsen en collaboration avec des personnes atteintes d’acromégalie et de professionnels de la santé qui s’occupent d’elles. Ipsen tient à remercier toutes les personnes qui ont participé à l’élaboration de ce site Web pour de leurs précieux commentaires et leurs témoignages. Les noms utilisés sur ce site Web peuvent être fictifs. Pour en savoir plus à notre sujet, consultez le site www.ipsen.ca

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