Which advice would you give to someone who has just been diagnosed with Addison Disease?

See some advice from people with experience in Addison Disease to people who have just been diagnosed with Addison Disease

Advice for Someone Diagnosed with Addison's Disease

Receiving a diagnosis of Addison's disease can be overwhelming and may leave you with many questions and concerns. It's important to remember that you are not alone and that with proper management, you can lead a fulfilling life. Here are some essential pieces of advice to help you navigate this condition:

1. Educate Yourself

Take the time to learn about Addison's disease, its causes, symptoms, and treatment options. Understanding the condition will empower you to make informed decisions about your health and actively participate in your care. Consult reputable sources such as medical websites, books, or support groups to gather accurate information.

2. Establish a Strong Support System

Building a support network is crucial when dealing with any chronic illness. Reach out to your family, friends, and loved ones to help you through this journey. Consider joining local or online support groups where you can connect with others who have Addison's disease. Sharing experiences, advice, and emotional support can make a significant difference in managing the condition.

3. Work Closely with Your Healthcare Team

Collaborating with a knowledgeable healthcare team is vital in managing Addison's disease effectively. Find an endocrinologist or a specialist experienced in treating adrenal insufficiency. Regularly schedule appointments to monitor your condition, discuss symptoms, adjust medications, and address any concerns. Open communication with your healthcare provider is key to maintaining optimal health.

4. Follow Medication Guidelines

Adhering to your prescribed medication regimen is crucial for managing Addison's disease. Typically, treatment involves replacing the deficient hormones with oral corticosteroids, such as hydrocortisone or prednisone. Take your medications as directed by your healthcare provider, and never skip or alter doses without their guidance. Carry an emergency injection kit of injectable hydrocortisone in case of adrenal crisis.

5. Recognize and Manage Stress

Stress can significantly impact your adrenal function and trigger adrenal crisis. Learn to identify stressors in your life and develop effective stress management techniques. This may include practicing relaxation exercises, engaging in hobbies, seeking therapy, or incorporating mindfulness and meditation into your daily routine. Prioritizing self-care and stress reduction is essential for maintaining stability.

6. Wear Medical Identification

Wearing a medical alert bracelet or necklace that identifies your condition as Addison's disease is crucial in case of emergencies. This will help medical professionals provide appropriate care during times when you may be unable to communicate your condition.

7. Be Prepared for Emergencies

Adrenal crisis is a life-threatening condition that requires immediate medical attention. Learn the signs and symptoms of adrenal crisis, such as severe weakness, dizziness, vomiting, and low blood pressure. Have an emergency plan in place, including educating your close contacts about adrenal crisis and ensuring they know how to administer your emergency injection if needed.

8. Maintain a Balanced Lifestyle

Adopting a healthy lifestyle can positively impact your overall well-being. Ensure you eat a balanced diet, exercise regularly, and get enough sleep. Avoid excessive alcohol consumption and smoking, as they can worsen symptoms and interfere with medications. Consult your healthcare provider for personalized recommendations regarding diet and exercise.

9. Monitor Your Health

Regularly monitor your health and be vigilant about any changes in your symptoms. Keep track of your blood pressure, weight, and any other relevant parameters as advised by your healthcare provider. Report any concerns promptly to your medical team to prevent complications and ensure timely adjustments to your treatment plan.

10. Stay Positive and Seek Emotional Support

Living with a chronic illness can be challenging, both physically and emotionally. It's important to maintain a positive mindset and seek emotional support when needed. Engage in activities that bring you joy, practice self-compassion, and consider therapy or counseling to help you cope with the emotional aspects of managing Addison's disease.

Remember, while Addison's disease requires lifelong management, it should not define you or limit your potential. With proper care, support, and a proactive approach to your health, you can lead a fulfilling life and pursue your goals.

Diseasemaps

Get involved with a good support group. Understand that even specialist like endocrinologists may never seen a patient with Addison's disease and maybe relying on outdated treatment information. I've found much info that my third endo has been open to learning about through recent clinical trials and studies, such as circadian dosing (taking your steroids every 4-5 hours 4-5 times daily in decreasing amounts to more closely match the body's natural circadian production of cortisol) as opposed to the sixty year old practice of twice a day dosage. Also, insist on an emergency injectable steroid to have in case of illness or injury. Regardless of what endos say, you may not have time to make it to the ER to get treatment for the resulting adrenal crisis. Every clinical guideline for the treatment of Addison's (also known as primary adrenal insufficiency) states that this steroid must be given to patients along with directions on how and when to use it. This can literally mean the difference between life and death and I've personally witnessed death of Addison's sufferers who did not have this.

From Diagnosis and Treatment of Primary Adrenal Insufficiency: An Endocrine Society Clinical Practice Guideline:
"4.5 We recommend that all patients should be equipped with a steroid emergency card and medical alert identification to inform health personnel of the need for increased glucocorticoid doses to avert or treat adrenal crisis and the need of immediate parenteral steroid treatment in the event of an emergency. (Ungraded best practice statement)
4.6 We recommend that every patient should be equipped with a glucocorticoid injection kit for emergency use and be educated on how to use it. (Ungraded best practice statement)
- See more at: http://press.endocrine.org/doi/10.1210/jc.2015-1710#sthash.Jd9j1Fkb.dpuf

Posted Mar 11, 2017 by justdeirdre 1051

Don't panic all is not lost it takes a while to get back to a normal state after a crisis
Gather as much info as you can
Remember everyone is different so not all Addisons sufferers can do the same stuff
Learn to listen to your body

Posted Mar 12, 2017 by S 2350

Information! Have a list on what to do fir crisis. Stress dosing! Inform ur local hospital, school etc. you can keep it under control

Posted Mar 12, 2017 by Vikki 1000

I know it scary and it feels like everything is crashing around you. Remember it could be worse, you can still be a functional part of society and live a long life. Just take care of yourself and never give up. What doesn't kill us makes us stronger.

Posted Apr 27, 2017 by Missy 1650

Learn to listen to your body. Medicate accordingly And learn about the medications. Less is more in most cases but you have to be able to tell when you should adjust.

Posted May 21, 2017 by Jodi 850

Seek out support groups online for further support

Posted Sep 12, 2017 by Tina 2050

Translated from portuguese Improve translation

Do the treatment properly, seek knowledge of the disease and assistance of other health professionals: dietician, psychologist, orthomolecular

Posted Jun 24, 2017 by Elineuda 1280