What happens next?
After your diagnosis, your healthcare team will work with you to understand how LAM is affecting you and develop a care plan that meets your needs.
This may include:
- lung function tests to check how well your lungs are working
- CT scans or other imaging tests
- monitoring your symptoms over time
- checking for conditions that can occur alongside LAM, such as kidney growths or tuberous sclerosis complex (TSC)
- regular follow-up appointments.
Everyone’s experience with LAM is different. Your healthcare team can help you understand what to expect and answer any questions you may have.
Understanding your diagnosis
LAM affects everyone differently. Some people have few symptoms for many years, while others experience more noticeable changes in their breathing over time.
Although there is currently no cure for LAM, treatments are available that can help manage symptoms and slow the disease for some people. Regular monitoring can help your healthcare team understand how LAM is affecting you and recommend treatment if needed.
Because LAM is a rare condition, you may not have heard of it before your diagnosis. Take your time to learn about the disease and ask questions during your appointments. Understanding your condition can help you feel more confident and involved in decisions about your care.
Questions to ask your healthcare team
You may find it helpful to ask:
- How is LAM affecting my lungs and other parts of my body?
- What symptoms should I look out for?
- How often will I need check-ups and tests?
- Can I continue working, exercising and travelling?
- What should I know about pregnancy and hormone treatments?
- Where can I find support and reliable information about LAM?
You may like to write down your questions before appointments or bring a family member, friend or support person with you.
Support is available
You do not have to manage LAM alone. Your healthcare team and Lung Foundation Australia can provide information, support and resources to help you live well with LAM.
Remember, everyone experiences LAM differently. Your healthcare team is there to help you understand your condition, manage symptoms and make informed decisions about your care.
Help create a brighter future for the LAM community
The LAM community is raising $50,000 to support a dedicated LAM Clinical Fellowship. By donating you can help build specialist LAM clinical and research expertise in Australia, strengthening knowledge, care and future research for people living with LAM.
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