Youth Programs & aHUS
On Participation in Childrens’ Activities, Sports, and Camps
Living an fun, rewarding life with friends is central to most children’s definition of what they want most from their school vacations or holidays – and that’s no different for a child diagnosed with the rare disease atypical HUS (or aHUS). Activity-based programs are a great way for children to explore and expand their interest areas, learn new skills, and enjoy interactions with other children outside their regular school experiences. Recreational directors and youth group leaders will likely have a different set of parameters and questions than school educators when a parent enrolls their child and the health form notes, “Indicate health issues or medical conditions”. What should people know about a child with this rare disease enrolling in their program, and how can parents, coaches, camp directors and others work together to ensure that it’s an enjoyable and safe experience?
Trying new things is key to learning about yourself and personal growth. Exploring interests can bring mixed emotions and self-doubt, for adults as well as children. Children might experience hesitance about their abilities or social interactions: “What if I’m no good at it?” or “What if I don’t have any friends in my group?”. When a child has a medical history that includes a diagnosis of aHUS, parents are used to being front-line caregivers and may be anxious about injuries, preventive wellness and healthcare issues when their child is in a youth program, playing sports, or at summer camp.
Older children can sometimes be great self-advocates regarding their health, but that’s not always the case. While young children with aHUS need adult guidance in multiple areas of medical care and lifestyle aspects, teenagers often just want to be ‘like everyone else’ and their strong need for privacy and independence must weigh in as important factors. Adults may struggle with conflicting considerations as to whether they should intervene for a teen’s better balance with wellness and safety. Medical concerns may add a level of complexity on top of the normal social/emotional and relationship issues on the minds of those who parent children living with this rare disease. Popular culture now includes terms for parents who hover anxiously over their child (helicopter parents) or those who attempt to remove any barriers or difficulties that may cause stress or lack of goal achievement (snowplow parents). Parents and guardians of young people diagnosed with aHUS fall into neither of those groups, instead they have concrete concerns based on their child’s medical history and how atypical HUS has potential to affect any activity or aspect of life. It’s extremely important for coaches and those leading youth programs to recognize there are distinct and important differences behind the motivation and actions of parents and guardians who have a child diagnosed with atypical HUS.
When parents enroll a child with any medical condition on a sports team or in a youth activity or camp, the most common questions are “How will this affect participation?” and “What should we watch out for?” The effects of atypical HUS vary greatly in severity, frequency of disease activity, and impact on organs or body functions. Children with the rare disease atypical HUS are usually hard to spot in a youth group or on a busy sports field, as aHUS most often manifests as an “invisible illness”. Symptoms with aHUS are often vague and may include stomach ache, tiredness, or headache. Some patients with atypical HUS experience a single episode and simply practice the usual guidelines for a healthy lifestyle, but with a keener awareness to be alert for certain red flags which may indicate potential health issues (such as unexplained bruising or blood in the urine). Other aHUS patients may experience organ failure that is temporary and confined to that particular time period of disease activity. Still other aHUS patients may lose and never regain kidney function, leading to a need for dialysis and eventual kidney transplant. Atypical HUS can affect people of any age, and some patients experience fatigue, memory issues,or neurological issues that can hinder certain types of activities. Given this, it’s especially important for open communication among the adults involved, prior to the start of the activity, sports season, or camp.
What should Parents & Recreation Directors Discuss?
The enrollment process for children’s activities and youth programs usually includes a medical form, most often with a line or small boxes to note relevant concerns such as allergies or medication. For children diagnosed with atypical HUS, we suggest that parents and guardians complete paper enrollment forms and additionally: suggest a phone conversation and/or provide a cover letter of additional information that recreation directors or youth leaders may need. If you’re head of a children’s program, sports director, or camp nurse, we encourage you to contact the family to begin a dialogue that ensures safe participation and an enjoyable experience for all concerned.
General Wellness Practices
People with atypical HUS can have aHUS activity unexpectedly ‘ramp up’ with immune or inflammatory responses, when the body’s immune system over-activates. Wellness goals are important for aHUS patients too, and just as for most people it’s recommended to stay hydrated, avoid too much sun, and be mindful of injury protocols (such as ice on a sprained ankle). Having a rare disease diagnosis can make people feel isolated and no child wishes to appear or feel ‘different’. Specific reminders regarding concerns or medication should be done privately, but do consider issuing general group reminders to all participants regarding wellness practices appropriate for the circumstances (such as water breaks or sunscreen re-application). That reinforces the concept that children are capable of engaging in certain health practices that benefit both themselves and others.
Hand washing – Hand washing is important to reduce viral and bacterial illness, and benefits all participating in an activity or program. Hopefully everyone takes time to model and practice good hygiene habits, as well as a regular routine to clean facilities where programs or activities. In addition to the topic of hand sanitizer use, your discussion may include sharing thoughts and protocols regarding use of an anti-bacterial towelette or spray to wipe down common areas or frequently shared equipment.
Sun Protection – Clothing that’s sun-safe is becoming more broadly available, to include spf shorts, shirts, and hats. Parents need to ensure that their children have adequate sunscreen and clothing, and to verify that recreation staff routinely remind ALL children in their care to reapply sunscreen, monitor sun exposure rates, and to adjust accordingly with regard to UVA/UVB conditions throughout the day.
Hydration – Maintaining proper hydration isn’t only for serious athletes and optimum sports performance. It’s an important aspect to keep healthy and avoid placing stress on major organs, with dehydration and heat-related illness being key concerns for very active people and for sports programs.
Field Trips & Outings – Sharing detailed information about special trips outside the regular program or youth group facility is important. For example, if a visit to a local event includes a Petting Zoo or pony rides, extra consideration must be given to posted health warnings such as “Hand Wash Station” for E. coli. Some children with aHUS have have dietary or fluid restrictions, need for wheelchair access, or other modifications so it’s important to review
Note: Parents or guardians should be notified of communicable diseases or outbreaks their child has been exposed to during activities, bus trips, or events. Examples include illnesses easily spread by contact such as measles, whooping cough (pertussis), strep throat, flu-like illnesses, or food-borne illness (such as E. coli). Meningococcal meningitis is a concern for those using eculizumab as a therapeutic drug to treat aHUS.
Topics for Discussion or Questions
Limitations on Physical Tasks or Activities Ask. Alternative offerings may be available that promote a higher level of inclusion. Check in with the child regarding their input and comfort levels.
Past history of aHUS Activity The Clinical Tracker (see resource list) is a tool to help focus discussions between aHUS patients or caregivers and their medical team. It can also provide recreation directors, camp counselors, and sport coaches an clinical overview of what aHUS patients may experience during episodes of aHUS activity.
Frequency of aHUS activity Atypical HUS activity can be ongoing (chronic illness) or may be isolated to specific episodes. Some aHUS patients experience years between episodes.
Severity of aHUS activity if current, or organs impacted with past aHUS activity Discuss whether there are issues or concerns that may affect participation, safety, or a need for modified activity. Atypical HUS can affect any organ where blood flows. Some aHUS patients have medication for high blood pressure, others are dialysis patients, and still others have no apparent medical issues with no restrictions on activities.
Seizure activity, or loss of Consciousness Many aHUS patients never experience either as a concern. If there is a past medical experience with seizures or loss of consciousness, provide specific details regarding when and type. Discuss in detail what actions to take should this occur while enrolled in the program, activity, or camp.
Medical treatment and/or Medication Schedules Provide information regarding specific medical treatments that may impact the schedule or activities for a program (dialysis, infusions, medication). Some aHUS patients have a central line or dialysis fistula, which may require specialized care, which should be fully reviewed by all parties at early stages prior to selection of an activity or program. Ensure resources and a direct link to physicians or care providers are established.
Socio-Emotional Skills and Relationships Rare disease patients may experience feelings of anxiety or depression. All children need to develop social and emotional ‘toolkits’ to help them navigate situations and relationships so that they can experience overall well-being and success with their goals and in their lives. Discuss any expected challenges, circumstances to monitor, or need for support in these areas.
Request for Accommodations or Modifications Ask at the time of program selection or during the enrollment process if any specialized access or program modifications may be available/needed. Note any dietary or fluid restrictions for snacks and meals. Some aHUS patients may need facilities that are accessible for those with physical or visual impairment. Others may need program modifications to accommodate rest periods or medication schedules.
Vision or balance issues, GI tract or headache problems Many aHUS patients never experience any of these issues. Discuss any current or past concerns, as well as what steps should be taken if they occur while the child is participating in the program, activity, or camp.
Insights the Parent or Guardian can Provide
Describe how current aHUS activity may affect participation or enrollment in this youth group or program. Offer a snapshot of your child’s past experiences with any similar programs and activities, and provide an opportunity for questions from the program director, coach, or youth leader.
Detail any anticipated aHUS-related issues related to participation in this activity. Are there any other concerns you may have?
Trying something new is both challenging and exciting. Provide an overview of what your child is looking forward to, including mention of any concerns, fears, or goals. Exchange ideas and questions among adults, either in conversation or emails.
State expectations and give clear guidelines as to when, and under what circumstances, parents or guardians should be contacted. Offer examples (medical details, injuries, social issues, activity risks, etc) that illustrate concerns or anticipated/traditional areas for potential issues.
Additional Information & aHUS Resources
Know aHUS, Know Us (Available in EN, FR, ES) Printable single page pdf about aHUS & how it may affect everyday life. Brief explanation of the disease, for the general public.
aHUS in Brief Printable page (2 sides) of aHUS Facts, describing medical aspects of this rare disease. Created for the 24 Sept campaign, aHUS Awareness Day 2022. Share the Link: https://bit.ly/aHUS2022facts
aHUS & Academics Info & Resources about aHUS learners (sections by age: babies to adults). Topics include teaching and learning issues that may impact academics, skill development, task completion, job training, and fatigue or memory issues.
Signs & Symptoms (pdf Brochure, Discussion Guide for Clinical Aspects) Common ‘things to watch’ and lab values trends to monitor, medical specifics for school or camp nurses as well as athletic trainers for team sports.
Atypical HUS 1.0 An article with more in-depth information about this rare disease.
Some aHUS patients may have difficulty with sleep issues, ability to focus, or other aspects that may affect their lifestyle and activities. Click HERE to read an article on this topic.