As patients with MPS II reach adulthood, the responsibility for your care is transferred from a paediatric to an adult care team. You may be used to a paediatric care team that often focuses on your overall development and growth, this differs from adult care which may involve an entirely new multidisciplinary team consisting of specialists that are each focused on specific symptoms. This transition can be a big change but it also provides you with an opportunity to be more independent.
As an adult, you can be more involved in your own healthcare decisions, including scheduling appointments. It’s important to talk about your individual needs with a physician, your journey is unique and discussions like this can help plan for the right care for you.
Hunter syndrome affects multiple organs, and as a progressive disease, symptoms can accumulate and worsen with age. However, each individual patient may experience different signs and symptoms, owing to the highly variable nature of Hunter syndrome. In a study of three adult brothers (aged 46–52 years), who were diagnosed in young adulthood (see below for more information about diagnosing late-onset Hunter syndrome), each had similar organ systems affected, but there was a high variability in symptom severity; for example, one brother had near-fatal heart problems, and another had minimal heart problems.
As you get older, your symptoms may worsen, or new symptoms can emerge, some of which may be unrelated to Hunter syndrome. Everyone is different, so try to avoid assumptions based on other patients. Consider yourself unique and ensure that your condition is frequently monitored to know how Hunter syndrome is affecting you.
Heart valve disease is very common in older patients. In the Hunter Outcome Survey (an international, long-term survey that collects information about the disease from patients), valve disease was the most common heart symptom, and in another study of patients aged 21–54 years, all patients had valvular heart disease. As heart valve disease can be life-threatening, it is important that you regularly have your heart monitored. Speak to your physician about any concerns you have, regarding the health of your heart or any other symptoms you have.
The following symptoms are common in adults with Hunter syndrome (but may or may not affect you), so make sure that you have regular appointments with a healthcare team of specialists that can monitor all of these body systems and check on these symptoms.