I’m not telling you it’s going to be easy

I’ve been sad this week.  I lost a good friend.  I’ve been a patient advocate for 15 years.  I’ve met a lot of great people along the way.  In the first few months of advocacy, I met another patient with a long and interesting life with PI.  We worked on launching the first Sub Q product- which meant traveling, speaking to small and large groups of doctors, patients, caregivers and sales teams.  We had down time in-between and we learned each other’s life stories.  His was remarkable to say the least.  He had been born with X-Linked Agammaglobinemia.

In his younger years, his Dad donated his blood and then infused it into him.  As science progressed, he began IM- intramuscular IgG.  His next step was IVig, and then SubQ. Along the way- he married and had 3 kids who were the love of his life.  Most recently, he was waiting for a new liver when he died at 55.  He was a man who loved life and fought hard to keep life. He was successful for over 20,075 days at staying alive!   He was a kind and gentle soul and I will miss him.

He was not the first PI friend I’ve lost – there have been others – taken by cancer too early, organ failure, hospital mishaps.  Why am I sharing this with you? Because each of these friends lived life with joy and hope.  Sure- they got down, but overall, they saw the beauty in living.

I want this to be a reminder to you and to me that life is worth the battle.  Some days are just so hard- but then there are those days that make up for it all.  Even if they are few and far between. Rare disease is not easy.  But we are more resilient for it.


Do you agree with me?

I would love to hear your take on living this PI life.



Agammaglobulinemia: X-Linked and Autosomal Recessive






  • Wanda Triggs Posted August 11, 2017 3:36 am

    That was a very soul touching article. Short and meaningful. I didn’t know this man but you made him come to life with the words you spoke.

    • mm
      Carol Miletti Posted August 15, 2017 5:36 am

      Thank you Wanda. He was a terrific guy

      • Nancy Posted August 25, 2017 8:27 pm

        We lost a lot of people in the years this touched my heart

        • mm
          Carol Miletti Posted August 27, 2017 1:06 am

          Yes Nancy, we have. It is heartbreaking too

  • Lori Wild Posted August 12, 2017 12:19 pm

    Love this Carol ❤️

    • mm
      Carol Miletti Posted August 15, 2017 5:36 am

      Thanks Lori

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