LIVING WITH PRIMARY IMMUNE DEFICIENCIES

If you are a long-time reader of my blog you may know that my youngest daughter, Katy has a primary immune deficiency.

This is a message from Katy in her own words.

I first began exhibiting symptoms of a PI when I was four years old, after catching whooping cough during a community outbreak... it was another 8 years before I was diagnosed with my first autoimmune disease, and 12 years between those first signs and my official PI diagnosis.

Thanks to the IDF, and their work to spread awareness of PI in the medical community and beyond, the average time from symptom onset to diagnosis has been drastically reduced (resulting in better outcomes for patients).

This picture is from a few years ago, after meeting with congressional offices all day, as part of the Immune Deficiency Foundation’s (IDF) Advocacy Day. 

I spent the day before racing between airlines, as my flights were canceled one after the other, due to a snowstorm in D.C.... but I finally made it (with help from the IDF, to get me on the last flight)! It was definitely a bumpy flight, but worth it.

The IDF continuously works to pass legislation that often benefits not only those with primary immunodeficiency, but for those with chronic illness in general. Most of this type of legislation has bipartisan support, but it often just doesn’t have priority and can get lost before it ever reaches the floor. 

Organizations like the IDF are fundamental to help move such legislation forward... and having face-to-face meetings between congressional members and those whose lives will be personally impacted by the legislation is so vitally important. We’re able to share personal stories and detail how such legislation will affect our real-world situations. 

This type of work is essential to improving the lives of the PI community and those with other types of chronic illnesses. It not only eases the burdens we face but is often lifesaving to so many.

This year, the IDF was able to coordinate meetings virtually, across the country, so that we could still meet with congressional offices from the safety of our homes! 

This introvert, who avoids telephones/zoom/FaceTime whenever possible, somehow became team leader for our meetings with our Senate offices! I made twelve pages of notes to have on hand.

Here’s a little glimpse into one aspect of life for many people living with primary immunodeficiency... immune globulin (IG) infusions. 

Once a week, I give myself subcutaneous IG infusions, which require multiple needles, a pump, and a few hours binge-watching a show to distract myself. I’ve been receiving these infusions for 24 years (the first 11 years doing IV infusions, once a month).

IG products are made from plasma donations (plasmahero.org), and provide the antibodies that people like me are unable to naturally produce, to help fight infections. They’re also now used to help treat many other diseases, including autoimmune/inflammatory diseases.

They’re not perfect (they help raise IGG levels over a period of time, but scientists are still trying to find a way to raise the other IG levels), they’re certainly not fun, but they are lifesaving to so many people, myself included.

There are often shortages of IG products, especially as they are being used to help treat more diseases. Like regular blood donations, plasma donations were down last year, and a significant shortage might occur over the next few years.

The Immune Deficiency Foundation, among the many resources they provide, continuously works to promote plasma donations (including through congressional advocacy, to help fund media campaigns). 

They also advocate to ensure coverage for PI patients, so that everyone can access the specific type of treatment they need, in the environment that best suits one’s personal health needs. This work is complicated and extensive, and is made possible because of donations!

Our family is participating in the Walk For PI. Our group name is Minecraft Dinosaur Walkers (named by Tessa of course)

Some of the reasons why we walk.

"Would you consider supporting me with a donation of $2, $4, or $24, for our official walk. in honor of being diagnosed with a primary immunodeficiency for the past 24 years?

100% of Walk for PI donations go towards this type of work!

All donations are tax deductible.

It's me, Laura, again.

I think I have almost walked through a pair of shoes, but I will keep on walking.

These are photos of Katy from before the pandemic. She has been primarily on home confinement for the last 20 months leaving only for medical appointments and to go sit outside on Cary's deck or porch.

I hope you will consider making a donation by clicking HERE.

Thanks so much to everyone for their support and thanks for reading my much longer than normal post.