Supporting Someone with Chronic Illness

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Resources to Support Your Chronically Ill Friend, Partner, or Family Member

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PARENTING AND CAREGIVING RESOURCES

CHRONIC ILLNESS AND DISABILITY

EHLERS-DANLOS SYNDROME AND HYPERMOBILITY

POTS AND DYSAUTONOMIA

MAST CELL RELATED DISORDERS

GASTROPARESIS

MEDIAN ARCUATE LIGAMENT SYNDROME

CHIARI MALFORMATION AND CCI

CSF LEAKS

CRANIOCERVICAL INSTABILITY

Chronic Illness and Disability

Understanding

Documentaries and Short Film:

CLAIRE

STANDARD OF CARE

Light Reading:

31 DIFFICULT EFFECTS OF CHRONIC ILLNESS

CHRONIC ILLNESS AT SCHOOL

SPOON THEORY EXPLAINED

WHAT IS CHRONIC ILLNESS AND DISABILITY?

Books:

BOOK LIST

How You Can Help

6 WAYS TO SUPPORT

ABLEISM

BEING A SUPPORTIVE PARTNER

CARETAKING FOR YOURSELF AND YOUR SICK PARTNER

GIFTS FOR CHRONIC PAIN

HELP SOMEONE IN A FLARE

HOW, AND HOW NOT TO SUPPORT SOMEONE

SUPPORTING EMPLOYEES

SUPPORTING SOMEONE GUIDE

TOXIC POSITIVITY

Support Groups

PARENTS OF CHILDREN WITH RARE CONDITIONS

PARENTS OF CHILDREN WITH AN UNDIAGNOSED GENETIC DISORDER

SPILL: SPOUSES & PARTNERS OF THOSE WITH CHRONIC ILLNESS

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Ehlers-Danlos Syndrome and Hypermobility

Understanding

Documentaries and Short Films:

COMPLICATED [EDS IN CHILDREN]

INTRODUCTION TO EDS AND DIAGNOSIS OF EACH SUBTYPE

KRISTIN MEANS - LIFE WITH EDS

LET'S TALK ABOUT EDS

LIVING WITH EHLERS-DANLOS SYNDROME | THE UNSEEN TRUTH

RARE GIRL | SHORT DOCUMENTARY

VASCULAR EHLERS-DANLOS SYNDROME

WE ARE VISIBLE

Light Reading:

MYTHS ABOUT EDS

IF EDS COULD TEXT

SPOON THEORY WITH EDS

How You Can Help

5 CONSIDERATIONS FOR SUPPORTING PEOPLE WITH EDS

5 THINGS WE NEED

17 THINGS WE WISH YOU'D STOP SAYING ABOUT EDS

CARING FOR SOMEONE WITH CHRONIC PAIN

CARING FOR SOMEONE WITH EDS/HSD

EDS SUPPORT RESOURCES

SUPPORT STUDENTS WITH EDS

Support Groups

LET'S CHAT (ZOOM) WITH EDS SOCIETY

GROUPS INCLUDE:

• vEDS PARENTS

• PARENTS

• PARTNERS AND SPOUSES

PARENTS OF CHILDREN WITH EHLERS-DANLOS AND HYPERMOBILITY SYNDROME

PARENTS OF CHILDREN WITH AN UNDIAGNOSED GENETIC DISORDER

PARENTS OF CHILDREN WITH RARE CONDITIONS

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POTS and Dysautonomia

Understanding

Documentaries and Short Film:

BEHIND THE VISIBLE

CHANGES: LIVING WITH POTS

THE LONG HAUL

WHAT IS POTS? DYSAUTONOMIA INTERNATIONAL 2016

Light Reading:

5 THINGS TO KNOW ABOUT POTS

THE BASICS OF POTS AND DYSAUTONOMIA

WHAT I LEARNED AFTER DIAGNOSIS

WHAT ITS LIKE TO LIVE WITH POTS

How You Can Help

21 THOUGHTFUL THINGS YOU CAN DO FOR SOMEONE WITH A MIGRAINE

8 SIGNS OF LOVE

CAREGIVER TIPS FOR DYSAUTONOMIA

LOVING SOMEONE WITH POTS

RELATIONSHIPS WITH POTS

SUPPORTING SOMEONE

SUPPORTING SOMEONE YOU LOVE DURING MIGRAINES

WHEN SOMEONE IS ABOUT TO FAINT

WHEN SOMEONE HAS FAINTED

Support Groups

POTSIBILITIES PARENTS

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Gastroparesis

Understanding

Documentaries and Short Film:

ABOUT G-TUBES

ALL ABOUT MY GASTROPARESIS (PATIENT STORY)

GASTROPARESIS: CAUSES, SIGNED, SYMPTOMS, DIAGNOSIS, TREATMENT

LIVING WITH A FEEDING TUBE

UNDERSTANDING GASTROPARESIS FOR LOVED ONES (90 MIN)

WHAT IT'S REALLY LIKE TO LIVE WITH GASTROPARESIS (PATIENT STORY)

Light Reading:

COPING WITH WEIGHT FLUCTUATIONS DUE TO CHRONIC ILLNESS

DIAGNOSTIC STORY AND CANNABIS USE

LINKS TO VARIOUS PATIENT STORIES

LIVING WITH GASTROPARESIS

WHAT IS GASTROPARESIS

How You Can Help

ACCOMODATING DIETARY RESTRICTIONS

ADVICE FOR FAMILY AND FREIENDS

BEING IN A RELATIONSHIP WITH SOMEONE WHO HAS GASTROPARESIS

DATING WITH GASTROPARESIS

DIETARY NEEDS

EAT FOR GASTROPARESIS AWARENESS MONTH

HOW YOU CAN SUPPORT SOMEONE WHO IS VOMITING

INVITE ME EVEN THOUGH I CAN'T EAT

PERSONAL RELATIONSHIPS AND DIGESTIVE DISORDERS

WHEN EATING HEALTHY MAKES YOU SICK

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Median Arcuate Ligament Syndrome

Understanding

Documentaries and Short Films:

MALS

MALS CELIAC PLEXUS BLOCK

MALS EXPLAINED + PATIENT STORY

MALS LAPAROSCOPIC SURGERY (GRAPHIC)

PATIENT STORY (SYMPTOMS, MISDIAGNOSES, SURGERY, RECOVER)

Light Reading:

ABOUT MALS

COPING WITH WEIGHT FLUCTUATIONS DUE TO CHRONIC ILLNESS

MALS FOUNDATION

MISDIAGNOSED FOR 20 YEARS

PATIENT STORIES

THIS WOMAN COULDN'T EAT FOR YEARS

How You Can Help

6 WAYS TO CARE FOR YOUR LOVED ONE AFTER SURGERY

ACCOMODATING DIETARY RESTRICTIONS

CARING FOR SOMEONE AFTER SURGERY

HOW YOU CAN SUPPORT SOMEONE WHO IS VOMITING

INVITE ME EVEN THOUGH I CAN'T EAT

PERSONAL RELATIONSHIPS AND DIGESTIVE DISORDERS

WHEN EATING HEALTHY MAKES YOU SICK

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Chiari Malformation

Understanding

Documentaries and Short Film:

CHIARI MALFORMATION: DIAGNOSIS AND TREATMENT

CHIARI MALFORMATION: DIAGNOSIS AND TREATMENTS (36 MIN)

CHIARI MALFORMATION: PATIENT STORIES PLAYLIST

PATIENT STORY WITH CHIARI MALFORMATION

Light Reading:

31 THINGS CHIARI PATIENTS UNDERSTAND

ABOUT CHIARI MALFORMATION

CHIARI MALFORMATION REVIEW

CHIARI PATIENT STORIES

How You Can Help

21 THOUGHTFUL THINGS YOU CAN DO FOR SOMEONE WITH A MIGRAINE

BRAIN INJURY IMPACT ON RELATIONSHIPS (VARIOUS TYPES)

SUPPORTING SOMEONE YOU LOVE DURING MIGRAINES

WHAT TO EXPECT AFTER CHIARI SURGERY

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CSF Leaks

Understanding CSF Leaks

Videos:

AN INTRODUCTION TO CSF LEAKS

CSK LEAKS ARE OFTEN MISDIAGNOSED

CSF LEAK- LOSING YEARS OF LIFE

Light Reading:

HOPES WITH LEAK WEEK

LIVING WITH A CSF LEAK (STORY LIST)

WHAT IS A CSF LEAK?

WHEN MY PAIN TURNED OUT TO BE MORE THAN A HEADACHE

How You Can Help

21 THOUGHTFUL THINGS YOU CAN DO FOR SOMEONE WITH A MIGRAINE

A HUSBAND'S JOURNEY SUPPORTING HIS WIFE

POST-TREATMENT CARE

SUPPORTING SOMEONE YOU LOVE DURING MIGRAINES

TIPS FROM A CSF LEAKERS WIFE

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Craniocervical Instability

Understanding

Documentaries and Short Film:

CCI AND EDS EXPLAINED

IMAGING CCI IN CONNECTIVE TISSUE DISORDERS

SYMPTOMS OF CCI

SYMPTOMS OF CCI (PATIENT PERSPECTIVE)

Light Reading:

ABOUT CRANIOCERVICAL INSTABILITY

DIAGNOSING CERVICAL INSTABILITY

REVIEW OF CCI

How You Can Help

21 THOUGHTFUL THINGS YOU CAN DO FOR SOMEONE WITH A MIGRAINE

BRAIN INJURY IMPACT ON RELATIONSHIPS (VARIOUS TYPES)

SUPPORTING SOMEONE YOU LOVE DURING MIGRAINES

WHAT TO EXPECT AFTER CHIARI SURGERY

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

Terms of service

Resources to Support Your Chronically Ill Friend, Partner, or Family Member

Chronic Illness and Disability

Understanding

How You Can Help

Support Groups

Ehlers-Danlos Syndrome and Hypermobility

Understanding

How You Can Help

Support Groups

POTS and Dysautonomia

Understanding

How You Can Help

Support Groups

Mast Cell Related Disorders

Understanding

How You Can Help

Support Groups

Gastroparesis

Understanding

How You Can Help

Median Arcuate Ligament Syndrome

Understanding

How You Can Help

Chiari Malformation

Understanding

How You Can Help

CSF Leaks

Understanding CSF Leaks

How You Can Help

Craniocervical Instability

Understanding

How You Can Help

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