LARA'S Objectives
-
> Education
Promoting knowledge and awareness of LAM to practitioners and women with LAM -
> Information
Providing information for and about women with LAM -
> Support
Providing for the needs of women with LAM -
> Diagnosis
Facilitating diagnosis by raising awareness of LAM -
> Research
Fostering and funding research to discover the cause, cure and prevention of LAM -
> Fundraising
Raising money to support our objectives -
> Networking
Collaborating with countries in our region by exchanging information
If you have been diagnosed as having LAM, you are probably confused, bewildered, and perhaps even angry. How could you have such a rare disease?! You may feel like you're 1 in a million. Your diagnosis may follow years of unexplained breathlessness, a persistent cough or chest pain. You may have been told you had asthma, bronchitis, emphysema or depression. It probably didn’t make sense until you found out about LAM.
LAM symptoms are often misdiagnosed and confused with asthma, emphysema or depression. Many women will never find out they have LAM. As yet there is no cure, but various ways of treating LAM are being trialled with some signs of success. Researchers are hopeful that studies of LAM and other diseases will result in a way of stopping LAM in its tracks.
1 Educate your GP. Most doctors, even respiratory physicians, have never seen LAM and know little about it; print our GP information sheet and give it to your doctor.
2 Find a respiratory physician with an interest in LAM. See our list and ask your GP to refer you.
3 If you haven’t already done lung function tests, including DLCO, arrange these with your GP.
4 Contact LARA to register your name and receive our newsletter, LARA Link with the latest news on research and treatments.