NEW JOURNAL FOR THE LGMD COMMUNITY
The Speak Foundation is publishing a new magazine for the LGMD community called LGMD News
To get a free copy of the magazine, please sign up at The Speak Foundation’s website.
Diagnosis and Registry
If you are suffering from muscle weakness and you have an elevated level of creatine kinase in your serum, we recommend that you get a genetic diagnosis to determine the type of muscular dystrophy you have.
One fact that is underappreciated in the LGMD communities is that “liver” transaminases (AST and ALT) are elevated in people with muscular dystrophy. It is because AST and ALT can come from the liver or from muscle. Notably, CK comes only from muscle. If you have muscle weakness and you have elevated levels of “liver” transaminases, check your CK level. It may help to prevent unnecessary liver tests.
Once you have been genetically diagnosed with LGMD2I, the first critical step is to sign up to the Global FKRP Registry.
Need a Doctor?
Sometimes the best recommendation comes from another person diagnosed with LGMD2I. Here, we are sharing information about medical centers and medical specialists recommended by other individuals within the LGMD2I community.
Send us your recommendations of medical centers and medical experts using the subject line “Recommendation”.
- Geographical Map
- Listings:
Managing your Condition and your Wellbeing
There are many facets of your daily life that you may be able to modify to maintain a good level of wellbeing. Below we provided links to websites that provide excellent information for people affected by muscular dystrophies and by LGMD2I in particular.
Help us maintain this page up to date by sharing with us information about modalities that you have found beneficial for your health using this link with the subject line “Wellbeing”.
You and the Rest of the LGMD2I Community
In addition to the information on this website, you will find complementary information in the sites listed below, along with many groups on Facebook that facilitate the exchange of practical information between individuals with 2I. You can learn a lot about your condition through the experience of others with LGMD2I.