Advocate raises her voice on Rare Disease Day

Elizabeth Hogan, ARPKD patient, fundraiser, and advocate.

Published on February 28, 2018 |  Today, on Rare Disease Day, we give voice to millions of people worldwide living with rare diseases through education and advocacy. Autosomal recessive polycystic kidney disease (ARPKD), a rare form of PKD, affects 1 in 25,000 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 25,000 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 attend 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 Elizabeth raise awareness—visit our website to learn more about ARPKD.

 

14 Comments

  1. jayne meth

    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.

    Reply
    • Elizabeth Hogan

      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.

      Reply
    • Mary

      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.

      Reply
  2. Lori Stephenson

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

    Reply
    • Elizabeth Hogan

      Thank you! Love you!!

      Reply
  3. Helen

    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.

    Reply
    • Elizabeth Hogan

      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.

      Reply
  4. Bill Brazell

    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!

    Reply
    • Elizabeth Hogan

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

      Reply
  5. Joseph Sciortino

    I have ARPKKD as well as Hepatic Fibrosis of my liver as well. My brother and sister have the same genetic defects well. We are all over 50 and just learned about all
    Of this over the past few years.

    Reply
    • MK

      Hi Elizabeth, my 26 month daughter was born with ARPKD. Her future is looking very bleak. You are the first person I have seen on the Internet who has reached adulthood. We are based in India and treatment is limited. Please can you guide me to reputed doctors and institutes who may be willing to treat her. Greatly appreciate it.

      Reply
  6. Linda Bevec

    My daughter has ARPKD and is almost 20 years old. She had a kidney transplant at age 9 and has worsening CHF with portal hypertension. Although her initial prognosis at birth was grim and she was not expected to survive behind a few months, she has done incredibly well. She’s had many, many challenges, illnesses, infections, hospitalizations and surgeries…but her life is a gift and she embraces every moment.
    She would love to connect with other ARPKD/CHF patients who are now adults. Is there any groups out there? She will be transitioning from pediatric to adult care in a year or so and we are finding it a difficult process. Please email me if there is an adult group or if any adult ARPKD/CHF patients are interested in starting one.

    Reply
    • PKD Foundation

      Our PKD Parents Chapter may be able to help connect you with families that have adult children managing ARPKD. You can reach our volunteer Coordinators, Kim and Michele by emailing pkdparents@pkdcure.org.

      Reply
  7. Megan Gaukroger

    Thank you for raising your voice to make this rare illness known. My now 14-year old Godson has ARPKD and has had two kidney transplants and is now studying at university and working towards his dream job of being an Aerospace Engineer at the Boeing Aircraft Company.

    Thank you for helping create awareness of this disease for people like my Godson

    Reply

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