Living with eos asthma
Educate yourself
Read the information in this toolkit.
The material is designed to help patients, families, and others learn about eos asthma and how to manage it.
Watch educational videos and webinars.
APFED and AAN have expansive e-libraries containing recorded interviews with experts, presentations, and recorded webinars.
Understanding Asthma
Understanding AsthmaA 101 guide to asthma
This resource includes everything you need to know for better breathing. It is a practical and easy-to-understand guide. Inside you’ll find signs and symptoms of asthma, inhaler and nebulizer know-how, exercise and indoor air tips, management tools, and more — all reviewed by medical professionals.
Find a specialist
Learn what specialists you might need.
Eos asthma is most often diagnosed and monitored by an allergist or a pulmonologist. Your provider(s) can help you determine which, if any, additional specialists you may need. This could include a psychologist who can assist with the emotional impact of chronic disease or an ear, nose, and throat doctor to help manage chronic rhinosinusitis or nasal polyps.
Find the right specialist.
Managing a chronic illness requires a strong doctor-patient relationship. It is important to find a specialist who is both knowledgeable about eos asthma and that you are comfortable with.
Ask your doctor(s) questions.
Before your next doctor’s appointment, write down a list of questions. Some questions to consider include:
- What types of tests or procedures will be performed? How often will they need to be repeated?
- What treatments do you recommend, and why?
- How will it be determined if treatment is effective?
- Will I need to take (or continue to take) any medications? Are there any special instructions (e.g., dose, frequency, best time of day, how to administer)?
- How will my information be shared/coordinated among the specialists involved in my care? Is a care coordinator available to help move this forward?
- Will I need special accommodations at work or school?
- What type of research is happening now? Are there any clinical trials I might be eligible for?
- What will this cost?
Questions for your doctor
Questions for your doctorWhether asthma is new to you or something you’ve lived with for years, there are times when you have questions about your breathing. Your doctor and care team are the right people to go to for answers – they know the latest information and treatments for asthma and can decide with you what is best based on your individual symptoms and concerns. This resource helps you create the questions you want to ask at your medical appointment.
Make a treatment plan
Develop a written plan for medication.
Make sure to include the dose, how often you should take it, and any special instructions.
Schedule follow-up visits.
Your health care provider may wish to repeat some tests or procedures more often than others. These tests will help determine if your treatment plan is working for you.
Need help affording your asthma medications? Check out the Allergy & Asthma Network’s Patient Medication Assistance page.
Asthma Action Plan
Asthma Action PlanAfter being diagnosed with asthma, you and your doctor will prepare a personal treatment plan. This is called an Asthma Action Plan. If you don’t have one, make an appointment with your doctor to develop one as soon as possible.
An Asthma Action Plan should spell out:
- how to treat your asthma daily,
- what to do when symptoms get worse, and
- how to handle situations such as exercise or when you have a cold or virus.
Build a support system
Join an online support community. Connecting with the eos asthma patient community for emotional support and guidance is invaluable.
- APFED’s online community: “Eos Connections” on the Inspire Network
- AAN’s online community: Living with Asthma
Find a local support group. APFED keeps a list of self-identified community-led support groups at apfed.org/find-support. Some groups host in-person meetings in their communities; others connect patients and families through social media.
Stay informed
Subscribe to receive emails from APFED and AAN. Both organizations send a monthly e-newsletter to their members.
Take care of yourself
It is important to understand what triggers your asthma symptoms. Asthma is not a one-size-fits-all disease – what sets off symptoms for you or someone in your family may be quite different from what affects others. When you understand what’s happening inside your lungs, you can take steps to prevent or minimize symptoms.
- Follow your Asthma Action Plan and your doctor’s recommendations.
- Avoid your asthma triggers. Know what triggers your asthma!
- Keep your prescriptions filled.
- Schedule (and stick with!) your follow-up appointments.
- Track your asthma symptoms and more using AAN’s Asthma Storylines app.
Focus on what you can control
Feeling sad, anxious, or even angry about a disease is okay. In fact, it’s normal. Rather than letting these feelings overwhelm you, acknowledging and expressing them can help give you a sense of control. Seek professional counseling if you need help coping with this chronic illness.
Know your rights in the workplace and school
Become familiar with your legal protections at work or your child’s rights at school:
- Family and Medical Leave Act allows employees to take up to 12 weeks of unpaid leave each year for medical or family emergencies. This applies to employers that have 50 or more employees. Learn more »
- Americans With Disabilities Act of 1990 (ADA) was amended in 2008 to expand the rights of disabled individuals. ADA requires employers to make reasonable accommodations for disabled workers who meet their definition of “disabled.” This may include additional time off or modified work schedules. As amended, ADA applies to employers that have 15 or more employees. Learn more »
- Section 504 of the Rehabilitation Act of 1973 prohibits discrimination against people with disabilities in programs that receive federal funding. It creates the framework to ensure children receive reasonable accommodations at school. This may include time to make up missed work and absences without penalty when related to their disorder. Every school-age child, whether meeting the definition of disabled or not, is legally entitled to a free, appropriate, and meaningful education. Learn more »
How to navigate school
How to navigate schoolAPFED has a toolkit for parents, students, and educators on how to navigate the school year. You’ll find information and templates for 504 planning.
