Atypical HUS & the Teen Years

Article No. 428

21 April 2021


Judging by the wealth of articles in popular magazines, raising a teenager still has many proud and joyful moments – but it isn’t for the faint of heart. Families with teens feature a host of everyday tangles wrapping around choices involving school, personal development, friendships, and activities. Teenagers often struggle to develop their own sense of identity, while dealing with issues that include peer pressure, academic stress, changes in body and self-identity, social media influences and a growing desire for independence.


Trying to navigate the teenage years with a rare disease like atypical HUS may include psychosocial aspects such as talking with teachers, friends, coaches, and others about aHUS and its lifestyle impact. It often includes a sense of isolation and ‘different-ness’ during a life phase when it’s so important both to fit in and to not stand out. Some people experience aHUS as episodic periods of illness, while others live with chronic illness rather than a short duration. That variability and unpredictable activity can make it difficult to express changing support needs or to make plans. Compounding that is the sense that many aHUS patients find it difficult for others to understand that aHUS is largely an ‘invisible illness’ with few symptoms on view. For all diagnosed with atypical HUS, it’s an unpredictable disease during which an uncontrolled immune response becomes triggered (such as by infection, certain drugs or pregnancy) and can cause damage which impairs functioning of the kidneys and major organs such as the heart, brain, and GI tract. It’s tough enough to put yourself out there if you’re a teen. Imagine trying to do so if you’re a teenager who is also one of the estimated 2 to 7people per million with atypical HUS.


The way children think, communicate, and understand their world changes over time and so parent communication styles must change over time as well. Easier said than done. That’s especially true considering the extra layers that come with parenting a teen diagnosed with aHUS. Young children often respond openly to questions or comments from peers or teachers regarding school absences, missed sports practices, and treatment appointments. Teens less so, and sometimes with negative emotional baggage. Body image is a sensitive topic for people of any age, and arguably more so for teens. Mental and emotional self-messaging about one’s own physical appearance is one aspect, but it’s also how we believe others see us. Scars from surgeries or vascular access, or fistulas needed for dialysis or other treatments, may cause a body image issue for some aHUS patients. Intellectually teens know that no body (and nobody) is perfect, but photoshopped images and social media filters can add to self-doubts and sometimes create anxiety or depression. Some issues may be transitory, such as visible hair growth for a certain blood pressure drug or leaving home/school for a hospital stay. Dietary restrictions and lifestyle adjustments to incorporate medical routines or appointments are one thing when a parent oversees it, but these can become a struggle (and potential danger point) for teenagers beginning to transition from childhood to adulthood and seeking ownership of their future. 


For people parenting a teenager, there’s a big learning curve. Wondering what your teen is really thinking and doing, and feeling some loss of control as your child becomes more independent, takes on a new dimension for parents of a child with a rare disease. It’s during the teenage years when families often face that first experience where medical professionals speak directly to the child during exams. Be prepared to address (and perhaps circumvent) those awkward moments that are sure to occur. Talk to your child before appointments to gauge their independence, comfort level, and ability to navigate medical information. What’s your child’s comfort level during a physical exam, and in regard to your presence? Can they provide accurate and updated medical information to healthcare professionals? Can they provide others involved with their care (specialists and parents) a snapshot of the key information from medical appointments? How likely are they to be compliant with doctor’s orders? Answers to these questions will be in a continual stage of change as children with aHUS grow into young adults.


Parent-caregiver roles, always intertwined for aHUS families, often become increasingly complex in the teen years. Don’t be surprised if there’s some pushback when your teenager complains about visiting medical staff and pediatric offices, even those frequented for years, who outwardly are most comfortable with younger children and inadvertently can seem unwelcoming to the teen psyche. Zoo or superhero decor is one thing, but equipment needs such as bed extenders or staff discomfort at removal of sterile covering from a hairy teen arm may move matters into another realm that is more emotion-based than pragmatic. Parents may begin running into a few barriers to coordinate care and to review their teen’s health records, as different practices and government policies often have age-triggered changes regarding privacy and patient records. No teen is going to be overjoyed to monitor their blood pressure, but taking responsibility to do so – and understanding the ramifications of noncompliance is a key milestone. Many parents feel most comfortable transitioning teen care with a hybrid model, where parents co-meet with their child and medical staff at the start and end of the appointment. This “frame the conversation” and “review understanding of findings and the care plan” can serve to help allay concerns that important information might be missed.


As teens become independent and begin to take ownership of their future, it’s both a delight and a worry to see them mature. Teens dealing with atypical HUS will respond differently according to their past experiences, and the ebb and flow within their life at any given point in time. Talk often. Ask questions. Listen more. Despite the turbulence and challenges likely to happen during the teenage years, hang on and take time to enjoy the ‘now’.


Articles on a Related Note

Transitioning Teens to Adult Nephrology Care

Atypical HUS & School

About aHUS: For Youth Leaders, Camps & Coaches



Leave a Reply