Rare diseases list in adults
Achieving good health and well-being can take some effort, and those with rare and undiagnosed conditions may feel encumbered by their symptoms.
“It’s hard enough being healthy and transitioning to adulthood, but now you add in a rare disease or any illness and it turns into a whole new ballgame, ” says Kathi Kayo, Founder of The IHope Foundation. “It feels like it takes twice the effort to get anything done, but I’m doing my best.”
By being proactive and learning important self-care techniques, you may feel more comfortable with this transition process too. Some examples of these techniques include:
● Asking questions about medications, such as, What are the side effects? What is the correct dosage? Will other medications interfere with this one?
● Learning to book appointments regularly and on time to avoid emergencies
● Being aware of the number of medications left and picking up refills before they run out
● Keeping up to date on new treatments, and reading reviews and comments from other patients
● Keeping track of medical records, including exam reports, test results, medication lists, and allergies. See Becoming an Empowered Patient: A Toolkit for the Undiagnosed for more information about managing medical records.
Having a rare disease can be limiting, and young adults may want to adopt practices to cope with problems and concerns related to their illness.
“It’s important to cope. For me, coping was found in writing. It might take some time to find what works best for you, but there’s something out there, ” says Alyssa Zeigler, board member of Hereditary Colon Cancer Foundation. “Don’t be afraid to tell people about your disease. Having someone to talk to about whatever emotions I felt about having my disease was better than keeping my feelings to myself.”
Some recommended coping strategies include:
● Talking to friends
● Participating in support groups
● Seeking out therapists who specialize in chronic illness
● Keeping a record of symptoms, possible triggers, and their levels of severity. Find additional information and tools for creating your own care notebook in the Becoming an Empowered Patient: A Toolkit for the Undiagnosed.
MED-21. Spontaneous intramural small bowel hemorrhage: a rare complication of anti-coagulation.(Section on Internal Medicine): An article from: Southern Medical Journal
Book (Southern Medical Association)
Can settle in canada at sympathy basses as i m suffering from a rare disease and have no medication facility?
In order to immigrate to Canada you must meet the requirements of one of the categories. Further, all immigrants are required to undergo medical exams. Any serious medical condition is likely to make you medically inadmissible to Canada.
There are hundreds of millions of sick people in the world who can't get medical treatment in their home countries. Nearly half the population of the planet doesn't have access to western medical treatment.