Marfans Disease Support

Marfans disease is a rare disorder that affects the connective tissue

, or the glue of the body. It has several harmful effects, including symptoms in the eyes, skeleton, cardiovascular system, nervous system, and lungs. For those with Marfans disease, or Marfan syndrome as it is better known, living with this disorder is hard. There are definitely some specific challenges to face by those with MFS, and the good news is that support is usually easily found despite the rare occurrence of this disease. It is important for those with Marfans disease to know that they are not alone, and support is vital.

Challenges

Those with Marfans disease, or Marfan syndrome, face specific challenges, not only medically but in everyday life as well. Children, and even adults, with MFS are often the brunt of jokes and teasing that make their condition difficult to deal with. Those who suffer from Marfan syndrome are also urged to do things that are against what some people believe as normal activities. Strenuous exercise or physical activity, contact sports, even medication doses meant to slow the heart rate which in turn keeps them from participating in normal activities are frequently advised for people with Marfan syndrome, and that alienates people a lot of the time and causes feelings of aloneness and even depression, especially in adolescence. Lung and eye problems may further keep sufferers from being able to participate in fun group activities, leaving them feeling like no one understands what they are going through.

Organizations

There are several different national and international organizations that are designed especially for the support, financially, socially, and personally, of those who suffer from Marfans disease. The National Marfan Foundation, Canadian Marfan Association, Marfan Association UK, and Marfan de Mexico are just a few of the national foundations and organizations for the support of those with Marfan syndrome. These organizations offer financial support for medical bills, specialized insurance for those with Marfans, even counseling and professional therapy for those who need help coping. They offer as much information as is medically possible about the syndrome, as well as information on recent studies and reports on the disease, new medications that are being developed, as well as reports that work toward a cure. All of this in one convenient location, even the opportunity to get in touch with others that are going through the same things, makes these organizations a powerful support tool for those with Marfans disease.

Personal Sites/Blogs

Organized groups of those affected by Marfan syndrome are not the only venues for finding good support and help in dealing with a diagnosis or life with Marfans disease. Personal sites, forums and blogs are all great ways to stay connected to others who are affected, even from the comfort of your own home. Forums and blogs can help you communicate your worries, fears, triumphs and struggles with others who are going through the same things. Personal sites are a great way to find information about current treatments, as well as ideas about how to be healthy without overstraining your heart, the latest medications, and even alternative activities for kids with Marfans disease who cant play sports.

by: Susan Meyer

POST COMMENT

Healthy living for quick weight loss Constipation Herbal Remedies and Colon Cleaser Treatment Five Years Of Symptoms And Abnormal Test Results Before Doctor Diagnosed Patient's Prostate Cancer Male Impotence treatment and Herbal Remedies Diet and Supplements to Prevent Kidney Stones Are You Suffering From Accutane Crohn's Disease? Keeping Your Home Comfortable During The Winter Months Low Cholesterol Herbal Remedies and Home Remedies High Blood Pressure Treatment and Herbal Remedies Healthcare Solutions Firms Can Win Big With IT Sales Outsourcing Partnerships Natural Cure for Arthritis And Herbal Treatment Meals For Skincare: Try to eat Your Way Towards Healthy and balanced Skin Obtaining A High Quality Cellulite Cream