RARE DISEASE DAY FEATURE:
Hi, I’m Audrey and I suffer from an immune disorder present at birth also known as a Primary Immune Deficiency. Of the 400 plus illnesses included under this umbrella, I have Common Variable Immune Deficient. Don’t take the name “Common” to mean it’s not rare; only 1 in 25,000 people will be diagnosed with this “disorder. The reason it is called ‘common’ is that it the most diagnosed of the PIDs. In short, it means the patient does make enough IGg (the immunoglobulins that fight infections). But there are a variety of other aspects to this disorder and each case presents in a different manner. For me, I see major GI issues and have a mixed connective tissue disorder. I don’t make enough antibodies, and what I do go crazy and attack other parts of my body (like my kidneys). I end up with a lot of auto-immune symptoms. But I also suffer from common side effects such as recurrent sinus and respiratory infections.
Some people can manage their symptoms with prophylactic antibiotics, but many more receive replacement immunoglobulins whether it be IV with a Nurse or under the skin at home. This Immunoglobulin replacement depends on you and the general public. How? 130 plasma donations are needed to treat me for one year. I am so grateful to each person who takes the time to donate and make this medicine possible.
Right now is a scary time for those who are immunocompromised like myself. While some of us have good viral protection, it’s the infections that go with illnesses that are the scariest aspects of COVID-19. It can cause pneumonia and the inability to breathe. Venting patients like myself opens us up to opportunistic infections. It is imperative that our doctors take this illness seriously. The general public can also help with this aspect. We don’t make antibodies so we depend on herd immunity to survive. Vaccinations, masks, and social distancing can really help your friend and family with immune issues.
Overall my immune deficiency is under control but it is something I will have all my life. So please have some patience with me on my bad days and help me celebrate on the good.