LIVING WITH ASMD

Living with ASMD after a diagnosis

Take charge of your ASMD

Each person's experience with ASMD is unique, and it is completely natural for you to have feelings of frustration, isolation, and sadness along the way. When symptoms progress, the physical effects of ASMD may also have an impact on your mental and emotional well-being. Being proactive with your symptom management may help you feel more in control over your health.

Your healthcare team will be your primary resource for information about managing your ASMD symptoms. Below are some tips on how to work with your healthcare provider to help create your personalized management plan:

You may see multiple specialists to help treat and manage different symptoms
The physicians on your team may include:
- Metabolic disease specialist (specialized in conditions involving the body’s metabolism)
- Geneticist (specialized in genetic conditions)
- Pulmonologist (specialized in lung disorders)
- Hepatologist (specialized in liver disorders)
- Gastroenterologist (specialized in conditions of the digestive system)
- Neurologist (specialized in conditions of the brain and nervous system)
- Hematologist (specialized in blood disorders)
Your primary care physician (PCP) may coordinate with your healthcare team for complete care. Your PCP can help you understand who you need to see and when
If you are the parent of a child with ASMD, your child's pediatrician will work with you and your child's healthcare team to coordinate care

Create a weekly journal of your or your child’s symptoms. Note how they change over time and how they affect daily life: at home, at work, and when you or your child are with friends and family
Share your notes and discuss with your healthcare team the ways in which ASMD impacts your daily life and how you cope with your or your child's symptoms

You may be prescribed treatment for your individual symptoms. Keep a record of how these treatments make you feel
Make note of any side effects or symptom changes that you experience

Attend your regularly scheduled appointments with the physicians on your healthcare team. This will help you and your doctors monitor any symptom progression and determine if your symptoms are being appropriately managed
Stick with your symptom management plan as outlined by your healthcare team. Contact them if you have any questions or concerns

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