Living with a PID during these difficult times

At the start of the pandemic, we experienced that all-encompassing feeling of fear. We essentially locked ourselves away and became real-life Rapunzels, only we weren’t waiting for Prince Charming to come to rescue us from our towers.

Now that the doors to our towers are slowly opening, I’ve noticed that the world is very different. Although for us it has stayed exactly the same, only now everyone in the world is living like a person with an immune deficiency.

We aren’t the only people that carry hand sanitiser anymore. We aren’t the only people that worry about the person standing next to us being sick and passing on their illness. We aren’t the only people worried about ending up in hospital.(That granted, We have much more to think about when it comes to our health).

The fear we experienced during COVID was unmatched and will likely continue for a long time, but if anything beneficial has come from the pandemic, it’s that healthy people are living like we do. I can only hope that this adjustment works in our favour and that the world becomes a little less fearful for people like us.

Our once ‘irrational’ fears and ‘germaphobe’ behaviour are now the norms, even though they were never irrational in the first place.

There has been pain, loneliness, loss and a hell of a lot of fear over the last 18 months, but I’ve learned that our bodies need time, patience and a little extra care sometimes, and that should never be branded as irrational.

It can sometimes feel inconvenient and feel like a lot of work, but during these last 18 months, I’ve learned to be kinder to my body and my mind.

Yes, sometimes I feel like it hates me, like it’s trying to kill me from the inside out, but it’s mine. I don’t get a second one (as much as I would like to trade it in sometimes).

The last year and a half have been scary and unpredictable, but it has forced the world to adopt some of our habits like hand sanitiser being in every coat or bag we have, or avoiding door handles and staying home when we’re sick

For more information, statements, FAQs and the latest news on COVID-19 and PIDS go to IPOPI

IPIA CHARITY NUMBER – UPDATE

At our last family day, we spoke about securing a charity number but unfortunately, the IPIA are still without a Charity number. This is not for want of trying.

We have submitted our application on many occasions to the Charities Regulator only to have it returned months later to have some detail or other changes in it.

We then update and submit once more. This lack of charity number has left us in a position where we can’t approach pharmaceutical companies or other business people for donations.

Our last submission was made on 16/07/2021; we haven’t heard anything yet so we’re hopeful that we will eventually receive our charity number.

HAE News

Early access to medicine for hereditary angioedema patients

ORLADEYO was approved by the European Medicines Agency (EMA) on April 30, 2021, for the prevention of recurrent hereditary angioedema (HAE) attacks in HAE patients 12 years and older. The full European Summary of Product Characteristics (SMPC) for ORLADEYO is available on the EMA website

About ORLADEYO™ (berotralstat)

ORLADEYO™ (berotralstat) is the first and only oral therapy designed specifically to prevent attacks of hereditary angioedema (HAE) in adult and pediatric patients 12 years and older. One capsule of ORLADEYO per day works to prevent HAE attacks by decreasing the activity of plasma kallikrein.

The addition of berotralstat will bring a much-needed option for HAE patients suffering with this debilitating disease.

HAE is a serious, and potentially life-threatening, rare genetic illness characterised by periodic episodes of acute swelling of the skin, pharynx, larynx, gastrointestinal tract, genitals, and extremities.

“HAE patients around the world are waiting for an oral, once-daily therapy to prevent attacks and reduce their burden of therapy” said Jon Stonehouse, chief executive officer of BioCryst.

The wait for many HAE patients in Ireland for more effective treatments can hopefully end soon.

4ID App

The new health agenda for patients with immunodeficiencies

IPOPI is launching a new app for patients with immunodeficiencies, offering a simple way to keep track of their conditions. Log symptoms, update prescriptions, follow treatments and view daily health summaries – key features easily accessible in 4ID.

Start Using 4ID

Scan the QR code with your smartphone/tablet

PID Patient true stories – #plasmatruestory

IPOPI invites PID Patients to share their #plasmatruestory in a short video in their own social media. Do not forget to add the hashtag!

PID patients true story is an awareness campaign on the need of Plasma for PIDs.