Teaching & Learning at School and Work
Needs & Issues regarding People with aHUS as Learners
Lifelong learning is an important goal for people of all ages, and across varied educational settings, but sometimes a rare disease diagnosis like atypical HUS (aHUS) presents unique questions for school staff, students, and their families. Adults enrolled at university or in ongoing job training programs also may need to deal with learning needs related to their rare disease or chronic illness.
Teaching & Learning at School or Work – some Key Issues
People diagnosed with a serious illness may deal with medical concerns on a daily basis, but it’s important for educators and employers to recognize that there can be impact throughout other aspects of life. Since social, economic, and relationship apects are interwoven into the fabric of everyday lives it’s not remarkable that school, family, and workplace considerations must be considered when discussing teaching and learning.
According to an article from the Health Policy Institute at Georgetown University, “more than one-third of workers are caregivers for family members with chronic conditions” and “more than one-third of adults age 18 to 65 have at least one chronic condition”. While definitions and statistics of people living with a rare disease vary around the world, there are an estimated 6 to 8,000 different rare diseases and more than 50% of people with rare diseases are children (Rare Disease Day, Global Genes, NORD, EURORDIS). Medical appointments, treatment regimes (such as dialysis), or episodes of unexpected health changes may mean that a student misses classes or an adult patient or family caregiver is absent from the workplace. It also means that assignment completion and work quality can be adversely impacted, along with personal connections such as relationships and with potential for impact on mental health. Living with a chronic illness or rare disease impacts not just the patient, but everyone and everything in their life. Some medical conditions may affect teaching and learning on a short term basis (acute illness), while others have a prolonged course (chronic illness).
Establishing clear pathways for exchanging information and discussing concerns is an important first step, so that all understand the current situation but also any potential issues that are likely to arise. Discussion of concerns or needs sometimes means that certain accommodations or modifications may be indicated by educators, employers, parents, or students. Those might include looking at possibilities for flexibility in work schedules, differentiation in course work or task completion time, physical environmental issues such as mobility or viral/bacterial load exposure, or modification of exam formats or classroom settings.
Although it’s a life-threatening and life-long disease, the rare disease atypical HUS presents very differently in patients and with few visible symptoms (termed an ‘invisible illness’). Caused by a change in genes, aHUS symptoms and severity vary greatly among patients with episodes of aHUS activity which can flare unpredictably and without warning throughout the person’s lifetime. Tiny clots forming in small blood vessels may cause damage anywhere in the body, and while kidneys are the organs most often affected, aHUS can impact the brain and central nervous system (but also the heart, lungs, GI tract, skin, eyes, and more). Issues caused by aHUS activity can seem non-specific, vague or mild (such as fatigue, stomach pain or headaches) or can be more targeted and severe (such as seizures or stroke). With such wide differences in disease characteristics and potential for multiple organ involvement, there is no single or ‘classical’ clinical presentation for those with atypical HUS.
Know aHUS: Know Us
A one page (2 sided) document, click to view this print-friendly pdf. Designed to share with educators, employers, and others. Available in 3 languages: EN, FR, ES
Educators and employers often identify missed time or performance issues as their top concerns for any student or employee, which is quite understandable. It’s hard to find the balance between compassion and work expectations at school or in business. Adult patients and family caregivers must balance health care matters with desire to have a ‘normal’ lifestyle that includes work productivity to yield income and health insurance benefits. Families who care for a child with atypical HUS may have concerns about development, school, and social or emotional issues that make parenting even more challenging (read more about aHUS parent concerns). It’s important to look at the potential for underlying aHUS medical reasons behind tiredness (fatigue, due to destruction of red blood cells) or difficulty with memory, focus, organization, achievement, or certain thinking skills (ranging from mild concerns to more serious cognitive impairment, related to poor kidney function or central nervous system issues). Educators and students have a variety of options to explore when the teaching and learning process may be impacted by cognitive impairment, memory issues, ‘brain fog’, or a learning disability.
Multi-system complications surrounding aHUS activity can involve neurological issues in an estimated 10-48% of people diagnosed with atypical HUS (read more about the impact of multi-organ involvement). Learning disabilities (LD) are neurological disorders that can make it difficult to acquire certain academic and social skills, and can be present even with people of above average intellect. Not just differences or difficulties with learning, learning disabilities affect the brain’s ability to receive, process, store, and respond to information. Learning about LD issues may help parents maximize learning opportunities for their child, but also holds potential for adult rare disease patients to improve their own success in learning and life. Employers and Human Resource departments may benefit from exploring this topic for all employees and training programs, not just those with a chronic illness or rare disease. (Read about types of LD, with more resources below.) Some people with aHUS can exhibit signs of sensory issues, which may impact the learning process. Being easily distracted, lacking focus, transitioning between tasks, and other characteristics may indicate reasons to check into sensory processing issues that may affect learners of any age. Sensory Processing Disorder or SPD disrupts how the central nervous system (CNS) receives, organizes, and processes information received from the body’s eyes, ears, muscles and other sensory receptors. Organizing, analyzing, and interpreting sensory information is vital for everyday life and functions. Given that CNS involvement may impact some patients with aHUS, explore SPD if sounds, textures, lights or other environmental conditions cause distress or limit daily life at school, work, or home. (See resources below or get basic talk about SPD.) In certain cases, ‘sensory overload’ may be at the root of some behavioral issues (read more about sensory issues at school).
Lifelong learning: It’s important for all individuals to develop the ability to continue gaining knowledge and applying it to life, and also to support lifelong learning and growth in others. The following information and resources can serve as a starting point to better understand the learning needs and issues for people challenged by a rare disease like atypical HUS.
Information & Assets: By Topic & Age
An overview of key issues has been provided under the heading “Teaching & Learning at School or Work”. Detailed information and resources for specific topics and ages follow, with sections noted below and organized from adult learners to youngest children. We encourage you to explore different sections, which are (in order):
Adults Living with aHUS (University/Colleges, for Employers (Adults with aHUS, also Caregivers in the Workplace. Adult Patients with aHUS)
School Age Learners
Babies to Preschool Learners
Family – Based Resources
School Staff Resources
Learn More about aHUS
Medical Information about atypical HUS (atypical Hemolytic Uremic Syndrome)
aHUS Alliance: Global Networks for
Atypical HUS Clinical Channel (YouTube) Clinical presentations offered by aHUS investigators and physicians around the world, providing an indepth look at topics of interest to the medical community and to aHUS families. Playlists from different meetings and groups, are available.
Atypical HUS Patient Voice (YouTube) Videos created by aHUS advocacy groups, patients and their families. Regional events and news stories from around the world are included, with playlists that include aHUS insights & issues.
Days of Special Note
aHUS Awareness Day – 24 September
International aHUS Awareness Day was created by the aHUS Alliance in 2015 to raise awareness for the many common concerns that affect aHUS patients regardless of nation, culture, or language such as: the need for quick and accurate diagnosis, access to treatment and healthcare options, shared data and information among aHUS researchers worldwide, and increased physician education about atypical HUS.
Rare Disease Day – the last day of February (28 or 29 Feb)
Created and coordinated by EURORDIS, world Rare Disease Day takes place annually on the last day of February. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
Adults Living with aHUS
Given that in real life there are no people, families or circumstances alike, it usually would not be productive or wise to attempt broad categorizations of resources. Adults may be diagnosed with a chronic illness or rare disease, or their lives be affected by their role as a family caregiver for someone with a rare disease like atypical HUS. While the exact number of aHUS patients is unknown (variations exist by nation, incidence, prevalence), an estimated 2 aHUS patients per million population means that most resources are grouped by more general headings related to rare disease or chronic illness. Despite that, the aHUS Alliance offers general information as well a starting set of resources grouped by three subsets: adults with aHUS in the workplace, at college, and in the role of family caregivers.
Adult Learners with aHUS
General Note about these Resources: Atypical HUS is an ultra rare disease, affecting an estimated Adults with learning disabilities can experience personal, social, and emotional difficulties that may affect their ability to be successful throughout their lifespan. After high school graduation, choices abound in areas of college or other educational opportunities, the workplace, and options such as the military. Since learning disabilities are neurological disorders that can impact a person’s ability to function in the workplace or at school, aHUS patients with LD issues can face stumbling blocks to successfully acquire certain academic, work, and social skills due to the brain’s ability to receive, process, store, and respond to information. (More on these topics in the section for School Age Children.)
If you’re an adult learner diagnosed with atypical HUS, or are a family caregiver: Speak with your employer or university advisor to share information and address concerns or needs, with the goal of creating an ongoing, mutual and pro-active dialogue about responsibilities and options for all involved.
Adults Living with aHUS: Resource Review
Taking Control: Optimizing Your Potential at Work (for Young Adults, a Global Genes Toolkit)
University/College (also see Adult Learners)
Adult Learners (also see University/College)
Job Accommodations for People with Learning Disabilities Common Issues & Tips
Rare Disease Caregivers (aHUS Alliance article)
Family Caregiver Toolbox (Caregiver Action Network)
School Age Children
What is aHUS, and what topics are helpful for parents to discuss with their school staff?
Atypical HUS presents very differently in patients with this very rare disease. It may occur with great differences in severity or frequency, such as isolated (acute) episodes of aHUS activity or instead presenting as an ongoing (chronic) illness. Most school health forms provide a section of short lines to note student illness concerns, which makes relaying information difficult since atypical HUS (atypical hemolytic uremic syndrome) has few visible or clear symptoms. Vague symptoms like fatigue, skin bruising, irritability, or stomach aches can occur, making it difficult to distinguish aHUS-related issues from more common childhood complaints. Atypical HUS activity often results in decline of kidney function, but tiny clots (thrombi) in small blood vessels can form with resulting damage to any organ or body system. Since 10-48% of aHUS may experience central nervous system (CNS) issues, some children with atypical HUS may experience seizure activity, cognitive or developmental delays, vision concerns, mobility issues, auditory issues, GI problems, or other physical manifestations that may impact the teaching or learning process. (Read more about the impact of multi-organ involvement to include CNS).
aHUS is a type of thrombotic microangiopathy (TMA). Click to view a print-friendly pdf of the aHUS Alliance Clinical Tracker trifold, with symptoms checklist.
Initially a key consideration in a student’s academic success is establishing communication between home and school about the needs of aHUS patients who are attending classes, at any grade level and within a public or private school setting. Communicating information about atypical HUS as a disease, explaining the student’s health status and needs, and meeting with school staff can help determine any needed accommodations. This can make a huge difference in not only optimizing academic success but also in providing a safe and comfortable school experience for children with atypical HUS.
In an ideal world all school age children would have an Individualized Education Plan (I.E.P.) which not only noted their strengths and weaknesses in various academic areas but also indicated insight into how teachers could maximize the school experience for that child across all areas. Teachers would know the best options to ‘get through to’ a particular student, and what teaching techniques and methods were less likely to be meaningful for that individual. But realistically, educational resources are not limitless and thus dictate schooling options and the array of educational services available. This creates the practical and strong need for parents and educators to team together, and jointly identify issues as they work together to address student needs.
Families are a critical part of any child’s education experiences, and school Pupil Evaluation Teams (P.E.T) can act in collaboration with parents and guardians to gain valuable home input about the child’s learning styles, needs, and abilities. Gathering data regarding the student’s progress or academic problems may entail interviews (with parents or student), forms or surveys (completed by parents, teachers, or primary physician or specialist), observation of the student, and analysis of the student’s performance (tests, classwork, work completion, behavior, homework samples, and more). School nurses can play an important role in managing chronic health conditions like aHUS through their advocacy and coordinated case management for students, to help improve achievement by optimizing teaching/learning interactions. Sudden changes in the health of people living with atypical HUS may present challenges, with differing abilities and needs over the course of the school year. Given that, Pupil Evaluation Team (P.E.T) participants may fluctuate to include a need-based range of school specialists such as a speech or occupational therapist, instructional support specialist, social worker, or school or family counseling services. Everyday guidelines (such as a 504 plan) and emergency health plans ideally should be in place and discussed at the start of each new school year. Public and private schools regionally have wide differences in matters such as class structure, school organization, outcome expectations, academic and support programs, and school/district budgets. (Learn basics about PETs, IEPs, and 504 plans in the USA in Balancing Academics and Serious Illness).
A diagnosis of atypical HUS may yield conditions that are not visibly apparent but can be medical complications of this chronic illness, such as heart disease, fine motor difficulties, or vision issues. Many students in public schools have conditions or disorders that are not readily apparent to others (invisible illness) rather than conditions that are more obvious and accompanied by easily identified issues. If a specific medical condition (such as diabetes, epilepsy, allergies, or atypical HUS) substantially limits the child’s ability to receive an appropriate education (such as that defined in the USA by Section 504), the child may be considered to have a learning “impairment”. As a result these students, regardless of their intelligence, will be unable to fully demonstrate their ability or attain educational benefits equal to that of non-disabled students.
An impairment (as used in Section 504) may include any disability, long-term illness, or various disorder that “substantially” reduces or lessens a student’s ability to access learning in the educational setting because of a learning-, behavior- or health-related condition. For aHUS patients obvious limitations may be an access point or fistula for plasmapheresis or dialysis, but some aHUS patients daily have other substantial limitations such as seizure activity, speech or hearing difficulties, dietary or fluid restrictions due to dialysis, balance issues or motor difficulties, or concerns related to transplants. Parents or guardians can request a review of educational options through the P.E.T. process for a school age child who has a physical impairment that substantially limits one or more major life activities.
Parents sometimes need information and encouragement to talk about their child’s medical situation at school, or feel that certain stigmas are involved with a complex medical diagnosis like aHUS. Given that aHUS can impact multiple organs, to include the brain and central nervous systems (CNS), people need to be aware of how that may affect the learning process. Chronic kidney disease may cause what some call ‘brain fog’ or other neurologic impact for school age children, so information about learning disabilities and sensory processing issues bears repeating again.
Learning disabilities (LD) are neurological disorders that can make it difficult to acquire certain academic and social skills, and can be present even with people of above average intellect. Not just differences or difficulties with learning, learning disabilities affect the brain’s ability to receive, process, store, and respond to information. Learning about LD issues may help parents explore options to maximize learning opportunities for their child (read about types of LD). Many children with special health needs may have sensory issues (muscle coordination or overly/under-sensitive to certain sounds, smells, tastes, visual input) that affect functioning in both home and school environments. Utilizing a simple Sensory Processing Disorder (SPD) checklist for parents is a good starting point to begin discussion with physicians, therapists, and school personnel about things which may impact the learning process. Being easily distracted, lacking focus, transitioning between tasks, and other characteristics may indicate reasons to check into sensory processing issues that may affect learners of all ages. Sensory Processing Disorder or SPD disrupts how the central nervous system (CNS) receives, organizes, and processes information received from the body’s eyes, ears, muscles and other sensory receptors. Organizing, analyzing, and interpreting sensory information is vital for everyday life and functions. Given that CNS involvement may impact some patients with aHUS, explore SPD if sounds, textures, lights or other environmental conditions cause distress or limit daily life at school, work, or home. (See resources below or get basic talk about SPD) In certain cases, ‘sensory overload’ may be at the root of some behavioral issues (read more about sensory issues at school).
Families and school staff may have a wealth of input regarding student behaviors of concern, such as: difficulty taking exams or completing assignments on time, academic performance out of sync with ability, or social issues to include confidence, motivation, or relationships with others. Working together the school and home can review benefits of modifications which might include among others: visual presentations of verbal material (word webs, outlines, visual organizers), differentiation of assignments (shorter papers, fewer or different problems, breaking tasks into smaller parts, or alternative projects/work), oral or untimed classwork or exams, setting accommodations (low noise or light levels, frequent breaks, sensory tools such as ball seating or fidget device), or organizational aids (clock sets to help with time management, use of a planner, study skills to learn and practice).
Atypical HUS activity is linked to uncontrolled auto-immune and inflammatory responses, so limiting the viral and bacterial load at school is a foundation for health plans for young people with aHUS. Encouraging good hand hygiene and discouraging school attendance when students are ill are likely already basic policy elements in place to foster a safe and healthy school environment. Family and school can discuss simple and age-appropriate steps such as providing a separate materials caddy for young aHUS students under the age of 10, to avoid sharing germs along with classroom group caddy of work materials handled by many hands: scissors, glue bottles, paintbrushes, markers, colored pencils, rulers and more. Older students may go to a school-wide technology lab fitted with computer keyboards, in which case either a first period class time slot or a quick wipe with an antiseptic cloth will help reduce germs for everyone. No one with a rare disease wants to be singled out as ‘different’ from other children in the school, so educators and parents need to agree that privacy is respectfully maintained. Some teacher actions may unintentionally cause a child with aHUS to feel isolated from peers, such as using a disinfectant wipe to clean materials in front of the student with aHUS, or singling the student out regarding any needed modifications or accommodations in the presence of others. Some aHUS aspects are more nebulous and intensive at certain ages, such as sensitivity regarding teen issues and transitioning to self-care. Experiential learning in outdoor classrooms may indicate that sun exposure protection and proper hydration are areas to be included in the school health protocols for students with aHUS. One hopes that schools would issue general reminders to all regarding recess rules and physical education class safety, especially since high impact or contact sports potentially could trigger an inflammatory response that may become uncontrolled in people with aHUS. Many preventive public health aspects of this type are matters that teachers, administrators, and school nurses normally address and foster in all classroom settings: however these areas are of particular importance for people with atypical HUS, and are good opportunities for children to practice self-care and teen self-advocacy.
School Age Children: Resource Review
Teen Specific Topics
Note: Teens with atypical HUS may face medical concerns alongside such the expected teenage issues (social or emotional) such as: body image, peer pressure, puberty, independence and other aspects. This set of resource links provides a starting place to learn more about some teen issues.
Babies to PreSchool Learners
Atypical HUS affects patients of all ages, to include infants and very young children. New parents and guardians of babies and preschoolers diagnosed with atypical HUS face all the normal joys and challenges, but family life can face uncertainty and stress when a child is diagnosed with a very rare disease. Few physicians will have experience in treating other patients with the same diagnosis. Parents and guardians must work around communication and advocacy issues for babies who are non-verbal or very young children with limited language skills. It’s difficult to find resources to share with friends and family who want to show their support and know about aHUS, and it’s discouraging when medical personnel ask the disease name, then reply that they’ve never heard of that rare disease. All areas of family life are impacted when dealing with a chronic illness or rare disease, so it’s difficult to strike and keep a home-work balance while dealing with a whirlwind of emotions and economic issues. First-time parents and guardians may not have an existing information pool or resource network regarding childhood development. Still, and despite the above, many aHUS families around the world have become informed advocates for their children, and that is a critical component in not letting your lives be defined by a rare disease diagnosis. Given the rarity of atypical HUS, know that support networks with other aHUS groups and families do exist and connect in various online forums, and there parents will find encouragement, parenting tips, and knowledge that they are not alone. The aHUS Alliance highlights aHUS research around the world, providing a global network for shared information, connections, and collaborations among people and groups through their international aHUS website.
Atypical HUS is life-threatening and life-long disease, and there is no “typical” presentation or standard treatment protocol for those with aHUS. Even within a single family whose members share the same genetic fault, similar genetic profiles or mutations do not mean that aHUS episodes will occur, or with what frequency or severity. Parents and guardians must become learners themselves, gathering information about the rare disease, learning about child development, and discovering their child’s strengths as well as areas where help and support are needed. Your own care team of pediatricians and specialists can best offer advice and resources, but make it your goal to keep current with aHUS research and to coordinate care as well as lifestyle issues and concerns.
Children are not merely small adults, they have different needs and issues. Atypical HUS can affect any organ or body system, so it’s vital that parents and guardians of infants and preschool age children are vigilant in monitoring their child’s growth and development. Visits to your child’s pediatrician should include discussion and observations about current and trending behaviors regarding four main developmental areas: cognition (such as understanding, reasoning, and problem-solving), motor skills and coordination (such as stacking, throwing, drawing, hopping), adaptive behaviors (such as eating, dressing, toileting), and social interaction (such initiating contact with peers, relationships in new settings, group play). In addition to physical manifestations of atypical HUS from laboratory tests, pediatricians should be alert to potential aHUS impact on organs other than the kidneys, to include hearing, vision or movement difficulties but also any problems related to the heart, lungs, or central nervous system (CNS). According to data collected by the global aHUS Registry, “renal manifestations were reported in 34%, gastrointestinal in 18%, cardiovascular in 15%, central nervous system in 11%, and pulmonary in 9%” of aHUS patients. A 2016 corporate release from Alexion Pharmaceuticals lists higher extra renal impact rates. While this points toward the need for aHUS patients to receive multidisciplinary care, it also indicates that speech, physical therapy, and occupational therapy may be among the early intervention areas that may be considered by pediatricians for some children living with atypical HUS.
As your child grows, new experiences and situations include transitions to school and becoming a lifelong learner – for both of you. We welcome you to also review information and additional resources links which are listed under various headings, to include resource sections for family caregivers, employers, school personnel.
Babies to Preschool: Resource Review
Young Children with aHUS (Medical)
Atypical Hemolytic Uremic Syndrome in Children Aged <2 Years (Abstract, FMI ask your physician)
Growth and Development
Emotional & Social: For Families
Rare Disease Challenges: Support for Patients and Families (aHUS Resource, Univ of Iowa)
Family as Caregivers
Rare Disease Caregivers (aHUS Alliance article)
Family Caregiver Toolbox (Caregiver Action Network)
School Staff Resources: Learn & Share