The Chicago Daily Herald recently printed an article about Melissa Palmer and Pompe disease affects her life. Parker lived for many years with Pompe disease as it went undiagnosed. Now she is receiving the treat for the lysosomal storage disease that she needs. To read the article please click here.
Archive | WELLNESS & FOOD
Find tips, and resources including overviews of different conditions.
The Ever-Changing Challenges of a Woman with a Bleeding Disorder
Hemophilia of North Carolina will host a SOAR dinner on July 24 in Durham. The theme of the evening is The Ever-Changing Challenges of a Woman with a Bleeding Disorder. Registration for the event is require and is open to women and girls only. For more information please click here.
Man with Stiff-Person Syndrome Finishes Marathon
The Monterey County newspaper recently wrote a great article about a man with Stiff-Person Syndrome who completed the Big Sur Marathon. To read about Shane James’ interesting and uplifting story, please click here.
Emergency Room Medical History Form for People with Hemophilia
Here is a link to a form that might be a good idea to have filled out in case you or a loved one takes an unexpected trip to the Emergency Room. The form helps give Emergency Room employees understand the medical history of a new patient. To download the form please click here.
Hemophilia Foundation of Northern California
The Hemophilia Foundation of Northern California has a great Web site that includes information about upcoming events and summer camps. To visit the site please click here.
Recommended Foods and Drinks for the Diets of People With Hemophilia
Nutrition is of particular importance to people with hemophilia, because what is consumed can reduce risks of bleeding and improve blood clotting. To meet this goal, eat and drink foods rich in the following nutrients: Vitamin K (spinach, broccoli, turnip greens, cabbage, asparagus, dark green lettuce, oats, bran, alfalfa, soybeans, whole wheat breads, canola, soybean and olive oils, […]
Diet for People Living with CIDP
Livestrong.com has a good article on diet for people living with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Included is information on the recommended foods to include in your diet and foods that should be avoided. To read the article please click here. Read More About CIDP on Our Blog Patient Profile: Violinist Living with CIDP
Exercise and Pompe Disease
Check out this great article on livestrong.com on why exercise is important for people with Pompe Disease. Before starting any exercise regime it is important to talk to your doctor. To read the article, please click here.
NHF – Steps for Living Web site
The National Hemophilia Foundation has an excellent source for people living with hemophilia, their families and care givers. There are sections for children, tweens, and young adults that are specific to the differences in lifestyles of the different age groups. To visit the Steps for Living Web site, please click here.
VA Hemophilia – "Balancing Sports and Exercise"
The Virginia Hemophilia Foundation will host a dinner on December 13 with a talk that will focus on sports and exercise and hemophilia. The event will take place at the Hilton Richmond at 6:30. For more information about the event, please click here.