Working with Pompe

Hello.

My name is Ikuo Kuribayashi, a member of Japan Pompe Association, age 58.

I work in Niigata-Meikun, a highschool in Niigata-city, by desk works.

Photo-1 is a snap of my desk.

It is difficult for me to stand up from chair, so I use stand support as

photo-2.

After stand up, I can walk with sticks as photo-3.

But if I fall down, it is very difficult to stand up again.

Teachers and students know about my disease.

They support me in highschool.

Photo-1,2,3 were taken by Hiroshi Idezuka, a student of Niigata-Meikun

highschool.

Thanks a lot for him, and thanks a lot for students and working fellows that

support me every day.

Marshall’s Mountain

Marshall is a one year old with LOPD that was diagnosed via newborn screening. Marshall lives on a farm in northwest Ohio, USA with his parents and two older siblings.

Newly Diagnosed Mom Of 2

On Feb 18, 2021 I was diagnosed with Late Onset Pompe Disease (LOPD).  I'm a married, 45 year old Mom of 2 young boys (5 and 3) who works full time "outside" the home.  (Due to COVID I've been working from home for the last year).  It's been a journey of 10+ years (probably closer to 20) to get diagnosed. During that time, my mobility has deteriorated to the point which I recently purchased a shiny red rollator to help me get around when I'm outside of the home.

I am so thankful to finally have a diagnosis and my Neurologist, Dr. Stuart Mendelson, is my hero. I begin ERT on 4/7/2021 and I am grateful that there is a treatment out there than can provide some hope of at least slowing the progression of this disease.  And I am thankful for this amazing Pompe community that is there to help me along the way.

Stephanie Levin

Age 45

Randolph, NJ USA

A Pompe Life

We are not our disease, our life deserves to be lived fully and we must learn to enjoy every moment!

Elisabetta, Italy, 41

 

Eric Smit (The Netherlands)

Hello
I'm Eric Smit, 52 years old/young😀and live in the Netherlands
We have a holidayhome on the Veluwe were we ride bikes and walk in the woods a lot
For the future i hope with the enzym therapy and physiotherapy to stay stable

Nicola (Italy)

La gioia, l'amore, la determinazione, la volontà, la pazienza:  La forza ...

Nicola, 3 anni e 1/2, malattia di Pompe a esordio infantile

Bari, Puglia, Italia

 

Joy, love, determination, willpower, patience: The strength ...
Nicola, 3 and 1/2 years old, infantile onset Pompe disease
Bari, Apulia, Italy

A walk with a sea view in Sicily, Italy

Over this past year there have been very few chances to be outside, so why not enjoy them with a nice and refreshing view of the Mediterranean Sea?

 

Happy International Pompe Day from Sicily!

Fabio, 42, Italy

#internationalpompeday #PompeAroundTheWorld #TogetherWeAreStrong