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Which advice would you give to someone who has just been diagnosed with Acute Disseminated Encephalomyelitis?

See some advice from people with experience in Acute Disseminated Encephalomyelitis to people who have just been diagnosed with Acute Disseminated Encephalomyelitis

Acute Disseminated Encephalomyelitis advice

Advice for Someone Diagnosed with Acute Disseminated Encephalomyelitis (ADEM)


Receiving a diagnosis of Acute Disseminated Encephalomyelitis (ADEM) can be overwhelming and raise numerous questions about the condition and its management. While it is important to consult with healthcare professionals for personalized guidance, here are some general pieces of advice that may help you navigate this challenging situation:




  1. Seek Expert Medical Care: It is crucial to consult with a neurologist or a specialist experienced in treating ADEM. They will guide you through the diagnostic process, provide appropriate treatment options, and monitor your progress.


  2. Understand the Condition: Educate yourself about ADEM to gain a better understanding of its causes, symptoms, and potential complications. This knowledge will empower you to make informed decisions about your treatment and lifestyle adjustments.


  3. Follow the Prescribed Treatment Plan: Your healthcare provider will develop a personalized treatment plan based on your specific condition. It may involve medications such as corticosteroids to reduce inflammation and manage symptoms. Adhering to the prescribed treatment plan is crucial for your recovery.


  4. Manage Symptoms: ADEM symptoms can vary from person to person, but common ones include fever, headache, fatigue, and neurological deficits. Communicate any changes or new symptoms to your healthcare provider promptly. They may recommend additional interventions or adjustments to your treatment plan.


  5. Take Care of Your Overall Health: Maintaining a healthy lifestyle can support your recovery. Ensure you get enough rest, eat a balanced diet, and engage in regular physical activity, as tolerated. Additionally, manage stress levels through relaxation techniques, hobbies, or seeking support from loved ones.


  6. Build a Support Network: ADEM can be emotionally challenging, and having a strong support network can make a significant difference. Share your diagnosis with trusted family members and friends who can provide emotional support, lend a listening ear, or accompany you to medical appointments.


  7. Stay Positive and Seek Emotional Support: Coping with a diagnosis like ADEM can be emotionally taxing. It is essential to maintain a positive mindset and seek professional help if needed. Psychologists or counselors can assist you in managing anxiety, depression, or any emotional difficulties that may arise.


  8. Connect with Support Groups: Consider joining support groups or online communities where you can connect with individuals who have experienced or are currently living with ADEM. Sharing experiences, tips, and advice can provide valuable insights and a sense of belonging.


  9. Stay Informed: Keep up-to-date with the latest research and advancements in ADEM treatment and management. This knowledge can help you engage in informed discussions with your healthcare provider and make well-informed decisions about your care.


  10. Communicate Openly: Effective communication with your healthcare provider is vital. Be open about your concerns, questions, and treatment preferences. This collaboration will ensure that your care aligns with your individual needs and goals.



Remember, every individual's experience with ADEM is unique, and your healthcare provider is the best resource for personalized advice. By actively participating in your treatment and seeking support, you can navigate this challenging journey with resilience and hope.


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2 answers
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Posted May 17, 2017 by Wlsnlove 1200

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Our son was 3 when he was diagnosed with ADEM. He just turned 4 on Tuesday. It's been 8 months since his attack set in on his brain and spine. He has recovered very well although he still continues with therapies ot, pt, and speech 2 days a week. 
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At 6yo I developed ADEM from vaccines... had chorea symptoms, and seizures, auditory and visual hallucinations, and headaches, and slurred speech and blurred vision, and wound up in a coma for 5 days... my white cells were at 42k and they were attack...
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This is a bit old & long-winded, so if you wanna cut to the chase, scroll down to 'UPDATE 17.5.17'... otherwise, I hope you read on... On 23rd January 2015, I was admitted to hospital suffering loss of control over my legs, chronic fatigue, blurred ...

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