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Parenting and Caregiving Resources

Click on the condition below to be brought to a list of resources. Unfortunately, there is a lack of resources for parents with chronic illnesses so most resources are for chronically ill children.

Please email us at EDSandCoSociety@gmail.com if you come across any helpful resources OR if you would like to be interviewed about parenting while chronically ill.


SUPPORT GROUPS
SUPPORTING SOMEONE THROUGH CHRONIC ILLNESS
BOOKS FOR PARENTS, KIDS, AND TEENS
CAREGIVING WITH A CHRONIC ILLNESS

FOR CAREGIVERS OF CHRONICALLY ILL CHILDREN:

CHRONIC ILLNESS AND DISABILITY
EHLERS-DANLOS SYNDROME AND HYPERMOBILITY
POTS AND DYSAUTONOMIA
MAST CELL RELATED DISORDERS
GASTROPARESIS
MEDIAN ARCUATE LIGAMENT SYNDROME
CHIARI MALFORMATION



CAREGIVING WITH A CHRONIC ILLNESS

OUR ADVICE

When having to care for dependents while managing your own chronic illness, consider the following things to help you manage your responsibilities and life balance:

  1. Simplify your life. Focus your efforts on your essential needs and tasks. Don't add more responsibility or commitments if it negatively impacts your physical or mental health care needs. 

  2. Learn how to batch your commitments & activities. There have been a lot of resources written on forming helpful habits in recent years. One of the key strategies across many of these resources has been the concept of batching. Consider learning how to meet your needs and commitments by doing 2-3 things at once (e.g., multiple family members' appointments booked altogether with the same provider, listening to a podcast while doing dishes or cooking, talking with a friend while out for a walk, etc.).

  3. Get help. What do you struggle with the most? Is there a way to get help by outsourcing it by paying someone to do it or trading for it in exchange for services? Do you need to talk to someone because you're feeling lost or overwhelmed? Getting help from others when you need it is important to your long-term care plan, and should not be ignored.

  4. Find your community. Find the kind of support you want and need. Is it in-person/online or active/passive participation? If you feel lonely, do you want to connect with others because you want to have a social connection or someone to help you through your struggles? We are all different, and how you answer the questions above will determine the type of people or resources that would help you with what you need.

  5. Find your new normal. Whether you are newly diagnosed, seeking a diagnosis, or a long-term spoonie, it's important to check in with yourself to ask if your current routine and lifestyle are working for you. Chances are that you will occasionally find a need to revisit your routine or lifestyle because things can change. Accept your current/changing needs and limitations, then add any supports you need now. Adapting and accepting a "new normal" will help you feel less reactive and more in control of your (often unpredictable) spoonie reality.

Written by our Vice-President, Colleen Egli

RESOURCES

PARENTING WITH A CHRONIC ILLNESS
SUPPORTING CAREGIVERS RESOURCES
TIPS TO REDUCE GUILT AS A PARENT WITH CHRONIC ILLNESS
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CHRONIC ILLNESS AND DISABILITY

SUPPORT GROUPS

PARENTS OF CHILDREN WITH AN UNDIAGNOSED GENETIC DISORDER
PARENTS OF CHILDREN WITH RARE DISEASES
ZEBRA FAMILIES (VICTORIA BC)

RESOURCES

CARING FOR A SERIOUSLY ILL CHILD
CHRONIC ILLNESS AT SCHOOL
HOW PARENTS CAN HELP THEIR CHILD WITH CHRONIC ILLNESS

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EHLERS-DANLOS SYNDROME AND HYPERMOBILITY

SUPPORT GROUPS

PARENTS OF CHILDREN WITH EHLERS-DANLOS AND HYPERMOBILITY
PARENTS OF CHILDREN WITH AN UNDIAGNOSED GENETIC DISORDER
PARENTS OF CHILDREN WITH RARE DISEASES
vEDS VIRTUAL MEETINGS
VIRTUAL ZOOM MEETINGS
ZEBRA FAMILIES (VICTORIA BC)

RESOURCES

51 TIPS FOR PARENTS OF CHILDREN WITH EDS
CARING FOR SOMEONE WITH HSD/EDS
CHILD PROTECTION AND EDS
COMPLICATED: DOCUMENTARY
EDS GUIDE FOR EDUCATORS AND PARENTS
EDS SCHOOL TOOLKIT
KIDS ZONE: HYPERMOBILITY
vEDS SCHOOL TOOLKIT
WHAT SCHOOLS NEED TO KNOW

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POTS AND DYSAUTONOMIA

SUPPORT GROUPS

POTSIBILITIES PARENTS

RESOURCES

CAREGIVER TIPS
FOLLOWING A DIAGNOSIS OF DYSAUTONOMIA
PARENTING A POTS KID
PARENTING AND SCHOOL BROCHURES
POTS TIPS FOR PARENTS
SCHOOL CONSIDERATIONS

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MAST CELL ACTIVATION DISORDERS

SUPPORT GROUPS

SUPPORT GROUP MEETINGS

RESOURCES

ALLERGY FRIENDLY AT SCHOOL
ANAPHYLAXIS IN INFANTS AND CHILDREN
KIDS CORNER
PARENTING A CHILD WITH MCAS
PEDIATRIC FACTS OF MCAS
PARENT SUPPORT LEAFLET
USING AN EPI PEN
WHAT IT'S LIKE TO PARENT A CHILD WITH MCAS

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GASTROPARESIS

SUPPORT GROUPS

GP SUPPORT GROUP FOR LOVED ONES

GASTROPARESIS RESOURCES

EXPLAINING GASTROPARESIS TO PARENTS, KIDS, TEENS
LIVING WITH A KID WITH GP (STORY)
WHEN TO VISIT THE ER

TUBE FEEDING RESOURCES

CHILDREN THAT ARE TUBE FED
RESOURCES FOR PARENTS
TUBE FEEDING AT HOME GUIDE FOR FAMILIES
TUBE FEEDING FAMILY LIFE GUIDE

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MEDIAN ARCUATE LIGAMENT SYNDROME

SUPPORT GROUPS

PARENTS OF CHILDREN WITH AN UNDIAGNOSED GENETIC DISORDER
PARENTS OF CHILDREN WITH RARE DISEASES
ZEBRA FAMILIES (VICTORIA BC)

MALS RESOURCES

PEDIATRIC MALS

TUBE FEEDING RESOURCES

CHILDREN THAT ARE TUBE FED
RESOURCES FOR PARENTS
TUBE FEEDING AT HOME GUIDE FOR FAMILIES
TUBE FEEDING FAMILY LIFE GUIDE

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CHIARI

SUPPORT GROUPS

PARENTS OF CHILDREN WITH AN UNDIAGNOSED GENETIC DISORDER
PARENTS OF CHILDREN WITH RARE DISEASES
ZEBRA FAMILIES (VICTORIA BC)

RESOURCES

10 TIPS FOR PARENTS OF KIDS WITH CHIARI
CHIARI SCHOOL RESOURCES
PARENT RESOURCE LIST

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Resources gathered and webpage designed by Kimberly Czotter. Last updated Feb 28, 2022.

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