Stage of life | Key elements and challenges | |||
---|---|---|---|---|
Across PROS | Specific to K–T | Specific to CLOVES | Specific to M-CM | |
Birth to toddler | Appearance of symptoms: vascular anomalies, port-wine stain, soft/bony tissue hypertrophy, asymmetrical overgrowth, enlarged head, macrodactyly Challenge finding qualified specialists | Appearance of symptoms: Capillary malformations present as port-wine stains Venous malformations present as varicose veins Lymphatic malformations present as lymphedema Vast majority of extremity hypertrophy occurs in the leg | Appearance of symptoms: abnormal extremities, fatty truncal mass, vascular anomalies, skin abnormalities | Appearance of symptoms: capillary malformations, “purple body,” webbed/extra digits, asymmetrical overgrowth, enlarged head, midline facial birthmark, low muscle tone |
Toddler/preschool age | Stigma concerns Support devices for mobility Exploring appropriate schooling options and support Frequent illnesses | Support devices for mobility Special clothing supplier/tailoring Stigma concerns can arise due to greater interaction with other children Begin thinking about schooling options Watch for trauma/infections | Developmental/learning issues may begin to appear Stigma concerns Support devices for mobility Exploring appropriate schooling options and support Frequent illnesses | Developmental delays may appear or become more apparent Support devices for mobility, communication Exploring appropriate schooling options and support Frequent illnesses |
Elementary school | Special accommodations at school Missed school/work due to appointments and surgeries Physical limitations Stress from looking different, being stared at Frequent illnesses | Work with school about special accommodations for physical limitations (physical education restrictions, mobility issues, flares) Missed school time due to doctor’s appointments and surgeries Stress/anxiety from looking different (clothing issues/compression garments) Flares (bleeding, infection) Watch for signs of scoliosis | Special accommodations at school Missed school/work due to appointments and surgeries Physical limitations Stress from looking different, being stared at Frequent illnesses | Special accommodations at school as developmental delays become more obvious Missed school/work due to appointments and frequent illnesses Physical and cognitive limitations Stress on family unit, restrictions on activities Children are often socially active, happy, but some may have behavioral disorders, such as autism or anxiety |
Puberty/teenage years | Hormonal changes with puberty can impact disease course Developmental gap can widen Pain and fatigue can become an increasing issue Relationships with peers can change–bullying may occur and may start to deal with intimacy/sexual health issues Anger and depression can emerge Frequent illnesses | Hormonal changes with puberty can impact disease course, causing even “mild” cases to become more complex Puberty brings an increase in clotting issues (DVT, PE, thrombophlebitis), as well as painful menstrual periods and/or weeping of lymphatic fluid that can cause stigma and shame Flares also can become more frequent and pain can become worse Watch for signs of scoliosis Relationships with peers can change along with a period of anger because of stigma and limitations on activities Teens start to deal with sexual health issues, including intimacy and birth control concerns | Hormonal changes with puberty can impact disease course Gap in development can widen; less support provided at school Pain and fatigue can become an increasing issue Girls may have heavy, painful menstruation Relationships with peers can change, bullying can occur and may start to deal with intimacy/sexual health issues Frequent illnesses Unable to participate in many activities | Hormonal changes with puberty can impact disease course Developmental gap can widen Special education services at school May have difficulty with peers Frequent illnesses, low energy |
Young adulthood | Move toward independent living Transitioning to an adult care team Struggle to educate themselves on their condition Navigating intimate relationships and dealing with sexual health issues and genito-urological complications Discussions on family planning Patients with more severe physical/mental challenges remain at home and rely heavily on caregivers | Move toward independent living Transitioning to an adult care team Struggle to educate themselves on their condition Patients with more severe physical challenges remain at home and rely heavily on caregivers Continue dealing with sexual health issues, including birth control and genito-urological complications Discussions on family planning | Move toward independent living Transitioning to an adult care team Taking responsibility for own care Navigating intimate relationships and dealing with sexual health issues and genito-urological complications Discussions on family planning Patients with more severe physical/mental challenges remain at home and rely heavily on caregivers | Mildly affected patients may move toward independent living Transitioning to an adult care team May start to take responsibility for own care Patients with more severe physical/mental challenges remain at home and rely heavily on caregivers Parents may need to make decisions about guardianship |
Older adulthood | Increasing medical issues due to disease progression and comorbidities Pain and fatigue leading to depression Therapist/psychologist support Potential disability, difficulty working full time | Increasing medical issues due to progression and comorbidities Pain and fatigue leading to depression Difficulty maintaining relationships Inability to work full time due to fatigue, frequent infections, hospitalizations Extensive planning needed for many activities | Increasing medical issues due to progression and comorbidities Pain and fatigue leading to depression Therapist/psychologist support Potential disability, difficulty working full time Reliance on mobility devices/support | Data were not available for this age group |