5 CVID Resources You Will Need After Your Diagnosis

Your CVID diagnosis will change your life. Below are numerous CVID resources you will need after your diagnosis. These resources can help you avoid negative experiences and help you better navigate this time of adjustment.

5 Resources You Will Need After Your Diagnosis Infographic

1. Financial Resources for CVID Patients

My family’s financial situation did change for the worse after my CVID diagnosis. In fact, I chose to resign from my full-time job before my CVID diagnosis because I was unable to get out of bed. Of course, at that time I didn’t know what was wrong with me. When I did find out I had CVID, I had no idea the difficult financial effects it would have on my family.

Start With Your Doctor and Your Current Insurance Company if You Have One

Many times your doctor’s office will handle much of the approval process for your CVID treatment. Also, your insurance company can provide you with detailed information regarding the out-of-pocket cost for your treatments.

If your insurance company hesitates to cover your medical expenses due to CVID, contact the Immune Deficiency Foundation for help. Several CVID patients have told me they received invaluable help.

Check for Medicine Co-pays Offered by Pharmaceutical Companies

The infusion medication for IVIG or SCIG infusions is expensive! Although I’m lucky enough to have private insurance through my husband’s work that has not given me any trouble approving treatment, the premiums are expensive. So, we chose a higher deductible plan knowing that I will cover my individual deductible after my first or second infusion of the year.

My pharmaceutical company’s co-pay assistance program covers the portion of my medication my insurance doesn’t cover. Although they differ slightly, most pharmaceutical companies offer a co-pay assistance program. I suggest talking with your doctor and doctor’s office about this to reduce your out-of-pocket expenses.

Although they differ slightly, most pharmaceutical companies offer a co-pay assistance program. I suggest talking with your doctor and doctor's office about this to reduce your out-of-pocket expenses. Click To Tweet

Genetic and Rare Disease Information Center (GORD) lists several organizations that can provide financial assistance for the different kinds of medical costs related to rare diseases. (Just in case you didn’t know, CVID is a rare disease.)

GORD lists several organizations that can help with travel costs, medication costs, co-pay assistance, treatment costs, fundraising to cover medical costs, navigating health insurance, applying for disability and finding help through your local community resources.

2. Therapy Resources for You and Your Family

I attended therapy after my CVID diagnosis, but as with all families, it seemed impossible to bring us all together at the same time for family therapy sessions. Don’t make the same mistake I did!

Ask Your Doctor for Recommendations

First and foremost, ask your diagnosing doctor for a recommendation for therapists. Your doctor is most likely asked this question often and has trusted colleagues he/she could turn to for recommendations.

Visit Your Insurance Company Website

I believe, largely due to COVID-19, mental health resources like therapy are more accessible than ever before. For example, I can log into my health insurance company’s website and immediately request a virtual therapy appointment by phone or chat session. You can even attend a therapy session virtually now! In addition, there is a self-directed mental and emotional health program offering several short instructional and information sessions regarding different issues like depression, anxiety, parenting, meditation and more.

If you do not have access to mental health coverage of therapy sessions through health insurance, that does not mean therapists will not work with you. Many provide services for payments based on your income or what you can afford. So, contact local therapists by phone with pen in hand, explain your situation and be ready to take notes on how they can help you.

Also, I suggest contacting the National Alliance on Mental Health (NAMI). NAMI has a one on one helpline that is open Monday through Friday, 10 am–8 pm, ET; 1-800-950-NAMI (6264) or at info@nami.org.

Ask Around-Word of Mouth Recs Are Often the Best

Hopefully, as part of your CVID Diagnosis Action Plan you created your own CVID support group. While members of your support group may not have CVID, they may see a therapist they highly recommend and even better works with chronically ill patients. Ask family and friends you trust for a recommendation as well!

Search the Internet for a Chronic Illness Therapist

I found a great search engine at Psychology Today where I could perform a search for a therapist specializing in chronic illness. You can also search good ole’ Google. I would highly suggest calling any therapist office and asking for a short “meet and greet” time. This would essentially serve as a time when you could ask the therapist some questions and get a general feeling if he/she would be a good fit for you.


3. CVID Resources You will Need After Your Diagnosis for Work and Career

If your CVID and/or its diagnosis hasn’t already affected your job; whether you are a homemaker, work outside the home or both…it will! Because of your CVID, perhaps you get sick often or experience much fatigue. Obviously, this can negatively affect your job performance. However, it doesn’t have to! There are plenty of people with CVID who are able to work while managing their treatments and symptoms.

The Immune Deficiency Foundation (IDF) has a helpful article offering advice on selecting an appropriate job if you are job searching. Personally, I have searched for jobs that are remote or offer flexible hours. IDF stresses the importance of choosing a job that offers health insurance if you do not already have access to insurance. In addition, IDF discusses your rights regarding your CVID diagnosis and your current job. They reference the Americans with Disabilities Act (ADA), U.S. Equal Employment Opportunity Commission (EEOC) and the The Family and Medical Leave Act (FMLA) in regards to the rights of a working person with CVID.

Chronically Capable Job Platform

When researching for this post, I found the coolest thing…Chronically Capable! Chronically Capable is like “Indeed” but lists flexible jobs for chronically ill and disabled jobseekers. Hannah Olson, a chronically ill person who was having trouble finding a job she could manage along with her health, created the job search engine.

Upon visiting the site, you’ll create an account and log in to view available positions with numerous companies. There are also resources in the form of articles related to questions chronically ill job seekers might have. Their current list of employers includes companies like Mighty Well, Horizon, Whatsapp, RXSaver and many more in a wide range of industries.

4. A CVID Mentor – An Invaluable Resource

Prior to receiving my CVID diagnosis, I worked at Varsity Spirit Fashion as a Sales and Service Representative. I sold cheerleading and dance uniforms to local teams in the Kansas City area. I was also responsible for helping the coaches choose and design uniforms, sizing for the uniforms, entering orders, keeping an eye on the production of the uniforms to meet deadlines, general customer service, and much much more!

Upon starting my job with Varsity, there is no way I could have successfully navigated all of my duties without my mentor, Tricia. Sure, my manager assigned mentors to mentees, but we became fast friends. Later, as a seasoned representative, I still turned to her for help. She became not only my job mentor, but my life mentor! Still today I often turn to her for advice and I will always consider her my life mentor (whether she likes it or not!).

MyIgSource Patient Advocates

Similarly, I sought out a mentor after my CVID diagnosis. Although I don’t have just one person like Tricia I always turn to with CVID-related questions, I do have several people I view as mentors. Shortly after my diagnosis, Laura from MyIgSource contacted me. (If your doctor’s office doesn’t automatically enroll you in MyIgSource, visit their site to enroll!)

Laura is a mother with CVID too. She also has a son with a Primary Immunodeficiency (PI). I have two sons with PI. So, you can imagine I had a lot of questions to ask her! Our first phone conversation must have lasted well over an hour! I consider the patient advocates like Laura with MyIgSource invaluable CVID Resources You will Need After Your Diagnosis!

Other CVID Patients You Meet on Your Journey

I have met many other CVID patients since my diagnosis and you will too! I’ve attended IDF events, local support groups and was lucky enough to serve on a PI Patient Leadership Council. Through each I’ve made special connections with other CVID patients. I keep in touch with these other zebras through social media. However, I’ve reached out by telephone or text when needed. Don’t wait for other people with CVID to contact you after diagnosis. Reach out to others and you’ll find more often than not other CVID Zebras are happy to share their experiences or listen to yours. (If you haven’t read my post on how to create your CVID support team, you must read it now!)

5. Personal and Real Stories of People Living with CVID

You might think this is a strange point to find in an article about CVID resources you will need after your diagnosis. However, when I was diagnosed in 2017, I didn’t know CVID even existed. I had never heard of it. No one I knew had ever heard of it. I was scared. I wanted to know how to live with CVID. Heck, I wanted to know if I was going to live! One of the first things I did was google people living with CVID. I couldn’t find much. All I wanted to read about were the real experiences of people. Thank goodness PI and CVID advocacy has come a long way since 2017! (Thank you Jeffrey Modell Foundation, IG Living, MyIgSource, Immune Deficiency Foundation!) Below are links to some personal and real stories of people living with CVID. Trust me. This is an important resource.

Immune Deficiency Foundation – Share Your Story

Irish Primary Immunodeficiencies Association – Patient Stories Archives

PID UK – Patient Stories

I hope these five resources help you no matter where you are at in your CVID journey. If you’ve been newly diagnosed, be sure to visit my Resources Page and check out some of the other articles on my blog.

Stay Strong My Zebra Friends!

Susan Alynne CVID Signature


Though DIVA as she may be, her path to success was not easy and is always evolving. Go here to read about her journey in “Becoming the CVIDiva.” If you want to send Susan Alynne a quick message, then visit her contact page here.