PKD Connection Blog

ARPKD, Voices of PKD

ARPKD patient raises her voice on Rare Disease Day

Elizabeth Hogan, ARPKD patient, fundraiser and advocate.

Rare diseases may only affect a small portion of the greater population, but today, on Rare Disease Day, we recognize hundreds of thousands of patients worldwide and how their conditions affect their lives. Autosomal recessive polycystic kidney disease (ARPKD), a less common form of PKD, affects 1 in 20,000 children, and those who survive the newborn period will often need dialysis or a transplant by age 10. As the first and only person in her family to have been diagnosed, Elizabeth Hogan was shocked to learn at age 12 that she had ARPKD, but she’s been raising her voice to educate others ever since:

There are some things that we all have memorized—your best friend’s phone number, your mom’s birthday, the password to your email, and the list goes on. Unlike some of my family and friends, I’ve had something else memorized since I was 12 years old: my ARPKD speech. It begins, “I have autosomal recessive polycystic kidney disease. ARPKD means I have many cysts on my kidneys that will continue to grow in number and size until my kidneys shut down. There is no cure. The only treatment is a transplant. I also have congenital hepatic fibrosis and portal hypertension which are associated with ARPKD,” and so on. Every time someone asks me about ARPKD, these are the words I share.

Elizabeth with friends and family at her local Walk for PKD.

It wasn’t until later in life that I realized not everyone has a speech about their medical condition. I’ve met people with well-known diseases such as diabetes, and after the initial, “I have diabetes,” the conversation ends. No explanation necessary. No speech memorized.

Elizabeth uses her voice to educate others about PKD and raise funds for research.

So why do I have to explain ARPKD to every person I meet? It is because ARPKD is a rare disease, affecting only 1 in 20,000 children. While treatment has improved and the survival rate has increased, ARPKD is still a life-threatening condition. Communicating how serious this disease is has been my biggest challenge. I look healthy but my kidneys, liver and spleen are not and I will continue to look healthy until my kidneys begin to fail. That’s why I volunteer with the PKD Foundation. I want to help others who have not been as fortunate in their ARPKD journey as myself. I participate in the Walk for PKD, organize local fundraisers and this year will be going to the PKD Connect Conference. This is all in effort to not only help others, but raise awareness for this devastating disease, too. I will continue to volunteer and raise awareness until there is an end to ARPKD.

You can help rare disease patients like Elizabeth raise awareness—visit our website to learn more about PKD and educate others.

Comments

  1. jayne meth says:

    Thank you for the wonderful work you are doing. I hope for a cure or at least a good treatment very soon. My daughter was just diagnosed with Spontaneous PKD and she has 2 little girls age 3 and 2 who are at risk.

    1. Elizabeth Hogan says:

      I’m sorry to hear your daughter was recently diagnosed. I’m glad she has people like you to support her! The PKD community is a tight one and thankfully there are so many people fighting for a cure.

    2. Mary says:

      Jayne my daughter also was dx with spontaneous PKD she has a 6mo old
      Hopefully our grd kids will be negative.Hopefully there will be a treatment and cure soon.

  2. Lori Stephenson says:

    Making a donation now in honor or you, Elizabeth..💜

    1. Elizabeth Hogan says:

      Thank you! Love you!!

  3. Helen says:

    Thank you for your story Elizabeth . My Great Grandaughter has ARPKD and is doing well with lots of help of medication for her high blood pressure. At 20 months old she is a beautiful child but we all know that she has a fight ahead of her. It’s good to hear adults that are living a with this terrible disease.
    We also do the PKD walk here in Aldelaide South Australia to raise money and help awareness of the disease.

    1. Elizabeth Hogan says:

      I’m sure she’s will have to fight but I bet she is a strong little girl and she is so lucky to have such a supportive family. I’m happy to share my story and I’ll keep your granddaughter in my prayers.

  4. Bill Brazell says:

    You and your family are great PKD heroes, Elizabeth. Thank you for writing this post, and for all that you do to raise money and awareness! See you at PKD Connect!

    1. Elizabeth Hogan says:

      Thanks Bill! And thank you for all you do! Can’t wait for June!

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