Newly Diagnosed?

Being told you have LAM affects everyone differently. Most are overwhelmed, in a state of shock and feel numb. Many women also experience a great deal of fear, anger and frustration.

For others it comes as a relief that finally they have an answer to why they have been feeling so poorly for so long. Because LAM is a rare disease, it is often misdiagnosed as asthma, bronchitis, emphysema or some other interstitial lung disease.

These feelings are common and are a natural part of coming to terms with a diagnosis. It is not only emotionally difficult for you, but can also be difficult for those who love you.

LAM Action is here to help you and your family. Throughout this website you will find information on this condition, answers to some of your questions and solutions to potential problems you may encounter. In addition to using this website, we also hope you’ll join LAM Action and use some of the other means of support we provide. We can help you meet, talk and write to others in the UK with LAM. Sharing your experience and learning from the experience of those who have been living with LAM for longer can be helpful, encouraging and inspirational.

In particular, we’d encourage you first to contact our LAM Action coordinator, Jill Pateman. Jill will be able to talk things through with you, and tell you more about LAM Action and the kinds of support available. She will point you in the right direction for more information. If you’d like to speak to someone else with LAM, Jill can also put you in telephone contact with other women with LAM. Jill is available on email jill.pateman@office.lamaction.org or in the LAM Action office on Thursdays at 07710 527636.

We also encourage all those in the UK with LAM to join the UK LAM Register. This national database facilitates research into the disease. We believe that progress in the understanding and management of rare diseases such as LAM can only be achieved in this way. We also hope that being on the register will be of benefit to individuals with LAM. For more information about the UK LAM Register, please click here.