This blog is dedicated to all the Porphyria patients worldwide.
The American Porphyria Foundation will provide updates and information here, as well as on the main site - http://porphyriafoundation.org
Caring for a loved one suffering from a medical condition can strain even the most resilient people. Caregiving can have many rewards while also taking a substantial toll on both the caregiver and their loved ones.
Common Signs of Caregiver Stress
Because caregivers are most commonly altruistic in nature, you may be completely focused on the health and welfare of your loved one before realizing your own overall well-being is suffering. When taking upon the role as a family caregiver, try to be cognizant of early warning signs of caregiver stress such as:
Feeling overwhelmed or constantly worried
Feeling tired most of the time
Sleeping too much or too little
Gaining or losing a lot of weight
Becoming easily irritated or angry
Losing interest in activities you used to enjoy
Having frequent headaches, bodily pain or other physical problems
Abusing alcohol or drugs, including prescription medications
Excess stress over an extended period of time can do more than cause increased depression and anxiety. Lack of sleep, eating a poor diet, and not getting enough physical activity can increase your chance of developing serious medical problems including heart disease and diabetes.
Strategies for Managing Caregiver Stress
Ask for help- don’t automatically assume you have to take on everything. Make a list of priorities and reach out to friends, other family members and even distant relatives.
Take daily breaks- You deserve it. Enjoy some “you time” throughout the day whether it’s going to the gym, reading a book, or engaging in another hobby.
Just say no- Accept the fact that you simply can’t do everything. Resist the urge to take on more activities, projects or financial obligations that you feel you can handle. Be honest when feeling you are being stretched too thin.
Get organized- try to keep your responsibilities prioritized. Don’t stress too much if you can’t manage everything and just take care of the most important things one at a time.
Stay connected with friends and family- try to keep yourself from being isolated from family and friends. It can be easy to completely absorb yourself into your role as caregiver increasing your stress level. Make time for social gatherings- dinner with friends, attending family events and holiday celebrations, etc.
Keep a positive attitude- When caring for another living with a chronic medical condition, it can be easy to fall into a negative mindset. Instead of dwelling on what you can’t control, give yourself praise for how much you are impacting the life of your loved one in need.
Set personal health goals- establishing a normal sleep pattern, regularly finding time to be physically active and fueling your body with a balanced diet are great ways to battle stress while maintaining your own emotional and physical health.
Join a caregiver support group- others in a support group can understand your trials and frustrations while offering alternative solutions. A support group can present opportunities to interact with others in order to avoid isolation; while giving you the chance to create meaningful relationships.
Q & A WITH PORPHYRIA EXPERT, DR. BRUCE
WANG, UCSF The APF asked our Facebook friends for their top questions they
would ask a porphyria expert.
The following questions were submitted
to Dr. Wang for his responses ...
Q. Does EPP give us bad teeth? Also, do people with EPP
get stomach pains or is that with the other porphyias?
A. The porphyrin that accumulates in EPP patients is protoporphyrin
IX, which does not cause discoloration to teeth or abdominal pain.
The type of porphyria that leads to discolored teeth is Congenital
Erythropoietic Protoporphyria. The porphyrias that lead to episodic
abdominal pain attacks are the acute hepatic porphyrias.
Q. I have EPP and I have a severe reaction on my hands
and lips. Do I seek urgent care? Also, what can you even do
when you burn your lips?
A. The acute reactions to sunlight in EPP can be very severe and,
unfortunately, there are not many effective options to treat the
symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as