Coping with Chronic Illness and Rare Disease

 Are you managing a chronic illness or
rare disease?
You are not alone.

In fact, an astounding 45% of all Americans are living with one or more chronic health care conditions in the United States, mostly invisible to others.

Living with the uncertainty of health flares and the daily stressors of medical routines and case management can impact with daily routines and relationships. Many patients have experienced medical trauma, neglect, and gaslighting. Because many chronic health care conditions are invisible or not identifiable to others, you may not get the support you need. This can contribute to feelings of loneliness and isolation.

  • Developmental Life Transitions

  • Physical and Emotional Isolation

  • Missed and Decreased Recreational Time

  • Relationship Stressors and Dating

  • Support Group Changes

  • Medical care managment and financial burdens

  • Acute, Chronic, Complex, and Medical Trauma

You don’t have a choice in your diagnosis, but you do have a choice in how you manage it. I am here to help make the journey easier. The emotional impact of living with a chronic illness can be isolating, but it does not have to be. Peer reviewed studies have shown that managing your mental health can be just as important as managing your physical health.

I live it and get it. I have over 17 years of experience treating patients, care partners, siblings, and loved ones who live with or support those living with chronic illness. I not only bring my professional, but personal experience to the therapeutic alliance. I live with over 30 chronic health care conditions, so my familiarity is also personal, so, “I get it.”

Individual, Family, Couples, and Group Therapy: Studies have shown the greatest indicator of improved mental and physical health are postive social connections. Living with the emotional burden stress of chronic illness can impact interpersonal relationships. Therapy can improve your insight, coping strategies, and communication skills to improve your relationships with loved ones, giving you the right kind of support. Peer reviewed studies have shown that living with a chronic health care condition can lead to mental health conditions such as anxiety, depression, medical trauma, and brain and neurogical condtions such as OCD and ADHD. I can address the underlying clinical mental health conditions. When mental health is more manageble, it provides a greater level of flexibility to navigate the incredibly complicated medical world of chronic illness management.

Consultation and Professional Resources for Professionals: I offer consultation services to psychiatrists, therapists, and other professionals who may not be aware of the intricacies and intersectiion of chronic illness and mental health. I conducted over 40 lectures, in addition to podcasts articles, professional writing and research contributions in the chronic illness and rare disease space for over 17 years. Understanding medical trauma and mental health is vital to working with individuals with chronic health care conditions and their loved ones. Please free to contact me for my CV for further information. and requests for collaboration.

Resources

Resources for Rare Disease and Chronic Disease Patients

Genetic and Rare Diseases
National Health Council
National Organization of Rare Diseases
PanAmerican Health Organization
Patient Advocate Foundation
Patient Services, Inc.
Patients Rising
World Health Organization

Allergies / Asthma / Bronchiectasis / Chronic Sinusitis / Eczema

Allergy & Asthma Network
Altogether Eczema
American Academy of Asthma, Allergy, and Immunology
American College of Asthma, Allergy, and Immunology
American Lung Association
American Thoracic Society
Asthma and Allergy Foundation of America
Asthma Society of Canada
Food Allergy Research & Education
International Alliance of Dermatology Patient Organizations
National Eczema Association
National Institute of Allergy and Infectious Diseases
World Allergy Association

Alopecia

American Hair Loss Association
National Alopecia Areata Foundation

Amyotrophic Lateral Sclerosis / ALS (a.k.a. Lou Gehrig’s Disease)

A Life Story (ALS) Foundation
ALS Society of Canada
Hope Loves Company
Les Turner ALS Foundation
Project ALS
The ALS Association

Autoimmune Illnesses and Connective Tissue Disorders

American Autoimmune & Related Diseases Association
Arthritis Foundation
Arthritis National Research Foundation
International Scleroderma Network
Lupus Canada
Lupus Foundation of America
Lupus Research Alliance
Rheumatoid Arthritis Foundation
Rheumatoid Arthritis Support Network
Scleroderma Foundation
Scleroderma Research Foundation
Sjogren’s Foundation

Back Pain: Degenerative Disk Disease / Spondylosis

Arthritis Foundation
Daily Strength.Org Support Group
International Society for the Advancement of Spine Surgery: The Innovation Society
National Spine Health Foundation
Spondylitis Association of America

Blood Disorders

AA/MDS International Foundation (Aplastic Anemia/Myelodysplastic Syndromes)
American Sickle Cell Anemia Association
Iron Disorders Institute
ITP International Alliance
Platelet Disorder Support Association
The ITP Support Association (UK)
World Federation of Hemophilia

 Chronic Pain

 International Myopain Society
National Fibromyalgia & Chronic Pain Association
U.S. Pain Foundation

COVID-19 Long Haulers

 Washington State Hospital Association Post-COVID Recovery Resources

 Cystic Fibrosis

 Cystic Fibrosis Canada
Cystic Fibrosis Foundation
Emily’s Entourage
Take A Breather Foundation

 Dysautonomia

Dysautonomia International
Dysautonomia Support Network
The Dysautonomia Project

 Ehlers Danlos Syndrome

 EDS Today
The Ehlers Danlos Society

 Endocrine and Metabolic Conditions

American Diabetes Association
American Thyroid Association
Cushing Support and Research Foundation
Hormone Health Network Endocrine Society
Hypoparathyroidism Association, Inc.
Juvenile Diabetes Research Foundation
National Adrenal Diseases Foundation
National Institute of Diabetes and Digestive and Kidney Diseases
Pituitary Network Association

 Fibrodysplasia Ossificans Progressiva (FOP)

 International FOP Association

Fibromyalgia

American Fibromyalgia Syndrome Association, Inc.
Daily Strength.Org Online Support Group
European Network of Fibromyalgia Associations
Fibromyalgia Association UK
Fibromyalgia Coalition International
International Myopain Society
National Fibromyalgia & Chronic Pain Association
National Fibromyalgia Association
PANDORA Org (Patient Alliance Neuroendocrineimmune Disorders Organization for Research & Advocacy)

 Gastrointestinal Diseases

American Gastroenterological Association
Association of Gastrointestinal Motility Disorders, Inc.
Beyond Celiac
Canadian Celiac Association
Celiac Disease Foundation
Crohn’s & Colitis Foundation
Digestive Disease National Coalition
Gastroparesis Patient Association for Cures and Treatments
Girls With Guts
IBD Support Foundation
IBS Patient Support Group
International Foundation for Functional Gastrointestinal Disorders
National Celiac Association
National Institute of Diabetes and Digestive and Kidney Diseases
SIBO Center (info page)
The Great Bowel Movement
The IBS Network

Heart Disease / Stroke

American Heart Association
American Stroke Association
Children’s Heart Link
Stroke Association (UK)
Stroke Recovery Foundation, Inc.
The Heart Foundation
Women Heart
World Heart Federation

Kidney and Urinary Conditions

American Association of Kidney Patients
American Kidney Fund
National Institute of Diabetes and Digestive and Kidney Diseases
PKD Foundation
PKD International (Global Alliance for Polycystic Kidney Disease)
Renal Support Network
Urology Care Foundation

Lung and Pulmonary Illnesses

 American Thoracic Society
British Lung Foundation
European Respiratory Society

 Lyme Disease

American Lyme Disease Foundation, Inc.
Global Lyme Alliance
International Lyme and Associated Diseases Society
Liv Lyme Foundation
Lyme Connection
Lyme Disease Association, Inc.
Lyme Disease Foundation
Lyme Disease.Org

 Mast Cell and Mastocytosis

 Mast Cell Hope
Super T’s Mast Cell Foundation
The Mastocytosis Society, Inc. (The Mast Cell Disease Society, Inc.)

 Migraines and Cluster Headaches

American Migraine Foundation
Association of Migraine Disorders
Chronic Migraine Awareness, Inc.
Cluster Headache Support Group
Clusterbusters
Coalition for Headache and Migraine Patients
Danielle Byron Henry Migraine Foundation
International Headache Society
Migraine Disease.org
Migraine World Summit
Migraine.com
Miles for Migraine
National Headache Foundation

Multiple Sclerosis (MS)

Accelerated Cure Project
Multiple Sclerosis Association of America
Multiple Sclerosis International Federation
Multiple Sclerosis News Today
National Multiple Sclerosis Society

 Muscular Dystrophy

 Muscular Dystrophy Association
Muscular Dystrophy Canada

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society
International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
PANDORA Org (Patient Alliance Neuroendocrineimmune Disorders Organization for Research & Advocacy)

 Myasthenia Gravis

Muscular Dystrophy Association
Myasthenia Foundation of America, Inc.
Myasthenia Gravis Association

Parkinson’s Disease

American Parkinson Disease Association
The Michael J. Fox Foundation

Phenylketonuria (PKU)

Children’s PKU Network
National PKU Alliance
National PKU News

Polycystic Ovary Syndrome (PCOS)

American Society for Reproductive Medicine
Hormone Health Network
National Women’s Health Network
PCOS Awareness Association
PCOS Challenge: The National Polycystic Ovary Syndrome Association

 Primary Immunodeficiency

European Society for Immunodeficiencies
IG Living
Immune Competence
Immune Deficiency Foundation
International Patient Organization for Primary Immunodeficiencies
Jeffrey Modell Foundation

Psoriasis

National Psoriasis Foundation

Pulmonary Hypertension

Pulmonary Hypertension Association
Pulmonary Vascular Research Institute 

Sleep Disorders

American Sleep Apnea Association
American Thoracic Society

Vascular Disease/Peripheral Artery Disease

American Heart Association
The Vascular Disease Foundation/Vascular Cures