Resources

Blood Disorders Cancer

Developmental Disabilities

Digestive Disorders

Heart Disorders

Respiratory Disorders

 

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Blood Disorders

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Hemophilia

About

Hemophilia is a rare disorder in which your blood doesn't clot normally because it lacks sufficient blood-clotting proteins (clotting factors).

 

Hematology.org 

Organizations

Hemophilia.org 

World Federation of Hemophilia 

Blogs & Community

Adventures of a Hemophiliac 

Voices of Hemophilia 

2 Brothers with Hemophilia 

 

10 Spoonie Self-Care Tips

 

Lyme Disease

 

About

 

Lyme disease is caused by the bacterium Borrelia burgdorferi and rarely, Borrelia mayonii. It is transmitted to humans through the bite of infected blacklegged ticks.

Hematology.org 

Lyme Disease Association 

Organizations

Texas Lyme Disease Association 

International Lyme and Associated Diseases Association 

American Lyme Disease Foundation 

Globally Me Alliance 

Blogs & Community

LymeDisease.org 

 

10 Spoonie Self-Care Tips

 

Sickle Cell Anemia

 

About

Sickle cell anemia is an inherited red blood cell disorder in which there aren't enough healthy red blood cells to carry oxygen throughout your body; the red blood cells are shaped like sickles or crescent moons.

Sicklecelldisease.org 

Hematology.org 

Mayo Clinic 

Organizations

ASCAA 

Sickle Cell Society 

Blogs & Community

Sickle Cell Warriors 

Sickle Cell Blog 

 

10 Spoonie Self-Care Tips

 

Cancer​​​​​​​

Breast Cancer

 

About

 

Breast cancer is a type of cancer that begins in the cells of the breast.

cancer.gov 

cancer.org 

Organizations

 

Komen 

bcrf.org 

National Breast Cancer 

Pink Fund 

Blogs & Community

 

Stupid Dumb Breast Cancer 

But Doctor I Hate Pink 

 

Colon/Rectal Cancer

 

About

 

Colon cancer is a type of cancer that begins in the colon or rectum, located at the digestive tract's lower end.

cancer.org 

cancer.gov 

Organizations

 

CC Alliance 

Fight Colorectal Cancer 

Colon Cancer Coalition 

Blogs & Community

 

Fight Colorectal Cancer - Community 

 

Esophageal Cancer

 

About

 

Esophageal cancer is a type of cancer that begins in the esophagus, the tube that runs from the throat to the stomach.

cancer.org 

Organizations

 

SALGI 

Blogs & Community

 

MD Anderson Patient Blog  

 

Leukemia/Lymphoma

 

About

Leukemia and lymphoma are both forms of blood cancer. Leukemia affects the blood and bone marrow, while lymphomas mainly affect the lymph nodes.

cancer.org 

All Blood Cancers 

Organizations

 

Leukemia & Lymphoma Society 

Leukemia Research Foundation 

Blogs & Community

 

Teen Cancer Blog 

Tips for Parents 

 

10 Spoonie Self-Care Tips 

 

Lung Cancer

 

About

Lung cancer is a type of cancer that begins in the cells of the lungs.

cancer.org  

Organizations

 

Lung Cancer Alliance 

Lungevity 

lung.org 

Blogs & Community

 

Gray Connections 

Outliving Lung Cancer 

 

10 Spoonie Self-Care Tips

What You Need to Know About Lung Cancer 

Prostate Cancer

 

About

 

Prostate cancer is a type of cancer that begins in the cells of the prostate.

cancer.org 

Organizations

 

pcf.org 

zerocancer.org 

Blogs & Community

 

Male Care 

Todd Seals 

 

Developmental Disabilities


Extra Lucky Moms

"Dear Mama is a collection of letters written by moms representing many types of disabilities, as well as a self-advocate herself. With all of the overwhelming information you get when you receive a diagnosis, we wanted a mom picking up this book to look at this cover, feel peaceful, and know that it was safe for her heart to read it."

Order the book here.


ADHD

 

About

ADHD is a disorder including attention difficulty, hyperactivity, and impulsiveness.

Additude Mag 

Mayo Clinic 

Organizations

 

CHADD 

ADHD Foundation 

add.org 

Blogs & Community

 

Additude Mag Blog 

Fat Brain Toys

Architectural Digest | How to Design an ADHD-Friendly Home

Autism Spectrum Disorder

 

About

 

Autism spectrum disorder (ASD) is a developmental disorder that affects communication and behavior. 

National Institute for Health 

Mayo Clinic 

Organizations

 

Autistic Self Advocacy Network 

Autistic Women & Nonbinary Network 

Autism Support Network 

myasdf.org 

National Autism Resources 

The Wallet Card® Project – Helping People with Disabilities Communicate with First Responders

Blogs & Community

 

The Autism Cafe 

Autism Mommy Therapist 

grasp.org/blog 

An Autism Observer 

Michelle Sutton Writes  

Cerebral Palsy

 

About

 

Cerebral palsy (CP) is a group of disorders that affect a person's ability to move and maintain balance and posture.

Mayo Clinic 

cereberalpalsy.org 

Organizations

 

yourcpf.org 

Disability Visibility Project 

Blogs & Community

 

Love that Max 

If at birth you don't succeed 

 

Down Syndrome

 

About

 

Down syndrome is a genetic disorder caused when abnormal cell division results in extra genetic material from chromosome 21.

Organizations

 

National Down Syndrome Society 

Canadian Down Syndrome Society 

Blogs & Community

 

Noah's Dad 

Hopeful Parents  

Extra Lucky Mom's Hospital Stay Checklist

Epilepsy

 

About

 

A disorder in which nerve cell activity in the brain is disturbed, causing seizures.

epilepsy.com 

Organizations

 

American Epilepsy Society 

epilepsy.com 

Blogs & Community

 

Living Well with Epilepsy 

Becoming a mum with epilepsy 

 

10 Spoonie Self-Care Tips

 

Sensory Processing Disorder

 

About

 

Sensory processing disorder (SPD) is a condition that affects how the brain processes sensory stimuli. Sensory information includes things you see, hear, smell, taste, or touch.

SPD Star 

Child Mind 

Organizations

 

STAR Institute 

SPD Network 

Blogs & Community

 

Lemon Lime Adventures 

 

Spina Bifida

 

About

 

Spina bifida is a congenital disability that occurs when the spine and spinal cord don't form properly.

Spina Bifida Association 

Columbia Spine 

Organizations

 

Spina Bifida Association 

Blogs & Community

 

Living with Spina Bifida 

The Notable Woman 

KeepItPushing.org

 

Digestive Disorders

Colon/Rectal Cancer

 

About

Colon cancer is a type of cancer that begins in the colon or rectum, located at the digestive tract's lower end.

cancer.org 

cancer.gov 

Organizations

CC Alliance 

Fight Colorectal Cancer 

Colon Cancer Coalition 

Blogs & Community

Fight Colorectal Cancer - Community 

 

Crohn's Disease, Colitis, & Ostomies

 

About

Crohn's Disease is a chronic inflammatory bowel disease (IBD) that affects the lining of the digestive tract. Ulcerative colitis is an inflammatory bowel disease that causes inflammation and ulcers in your digestive tract. An ostomy is surgery to create an opening from an area inside the body to the outside in order to treat certain diseases of the digestive or urinary systems.

Crohns and Colitis 

Mayo Clinic Crohns 

New Ostomy Patient Guide

Organizations

 

United Ostomy Associations of America 

CrohnsandColitis.org 

Crohns & Colitis Foundation 

Crohns and Me 

Blogs & Community

 

Stolen Colon 

Uncover Ostomy 

Crohnsdisease.com 

Gutless and Glamorous 

The Vegan Ostomy 

 

10 Spoonie Self-Care Tips

  

Diverticulitis

 

About

Diverticulitis is the infection or inflammation of diverticula, pouches that can form in your intestines. 

 

Foundation for Gastrointestinal Disorders 

American Society of Colo-Rectal Surgeons 

Organizations

World Gastroenterology Organisation

Gastrointestinal Society

National Institute of Diabetes and Digestive and Kidney Diseases

 

Feeding Tubes

 

About

WebMD Feeding Tubes 

Living With Tube Feeding 

Organizations

 

TubeFed.com

Feeding Tube Awareness 

Oley Foundation 

Inside Out Care 

Swallowing Disorder Foundation 

Feeding.com 

FeedingMatters.com 

FirstStagesFeeding.com 

Pediatric Feeding Association 

Blogs & Community

 

Tube Fed

G-Tube Babies Facebook Group 

Adult Tube Feeding Facebook Group 

She Got Guts Blog 

The Tube Fed Wife 

Singing Through the Rain 

10 Spoonie Self-Care Tips

  

Heart Disorders

Congenital Heart Defects

 

About

heart.org 

National Institute for Health 

Organizations

 

Pediatric Congenital Heart Association 

The Children's Heart Foundation 

Blogs & Community

 

Conquering CHD 

Heart Baby Scarlett 

  

Kawasaki Disease

 

About

 

Kawasaki disease is an illness that causes inflammation in blood vessels throughout the body. 

Mayo Clinic 

Healthy Children 

Organizations

 

KD Foundation 

Kawasaki Kids Foundation 

Blogs & Community

 

Isaiah's KD Journey 

Kawasaki Disease  

 

Postural Orthostatic Tachycardia Syndrome (POTS)

 

About

POTS is the name for a group of symptoms related to the reduced blood volume that occurs when standing up.

 

Dysautonomia International

myheart.net 

Organizations

Dysautonomia International

Blogs & Community

With a Side of Salt

Living with Bob

Lethargic Smiles

Life with POTS

 

Respiratory Disorder

Cystic Fibrosis

 

About

Cystic fibrosis is a hereditary disease that damages the lungs and digestive system.

About Cystic Fibrosis 

Mayo Clinic 

Lung.org 

Organizations

 

Cystic Fibrosis Foundation 

Blogs & Community

 

One Breath 

Gunnar Esiason 

Cystic Fibrosis Foundation Blog 

 

Esophageal Cancer

 

About

Esophageal cancer is a type of cancer that begins in the esophagus, the tube that runs from the throat to the stomach.

cancer.org 

Organizations

SALGI 

Blogs & Community

MD Anderson Patient Blog 

 

Laryngectomy

 

About

 

Laryngectomy is the removal of the larynx and separation of the airway from the mouth, nose and esophagus, entirely or in part.

University of Illinois Health 

Organizations

International Association of Laryngectomees 

Blogs & Community

 

Spirotect 

dribrook.blogspot.com 


Diabetes

Blogs & Community

Beyond Type 1

 

General

About



Blogs & Community

Annie Louise Foundation - Hospital Support

The Connected Parent