Jireh Somera - Fabry Fighter

Episode 80 April 26, 2023 00:47:22
Jireh Somera - Fabry Fighter
Energy in Action by MitoAction
Jireh Somera - Fabry Fighter

Apr 26 2023 | 00:47:22

/

Show Notes

PARENTS AS RARE - EPISODE 080

Jireh Somera - Fabry Fighter

 

Jireh Somera is a husband, father and Fabry fighter. While our rare disease journeys have been different, we share a lot of similarities and it's nice to have someone to relate to. In this episode, Jireh shares some of his journey with us, giving us insight into staying present, shifting perspective and trusting the road ahead, knowing that it's not what he can't do, but what he can do. 

 

EPISODE HIGHLIGHTS

 

What was life like leading up to your diagnosis?

In 2020, my son was born and I was a new dad. I took the opportunity to work at home and embraced my time with him and my wife. My career was where I wanted it to be and we had just bought a home. 

 

What were your first symptoms?

I didn't know I had symptoms of Fabry disease-- I just thought I had normal headaches or elevated blood pressure. I went to work with a headache, assuming it was allergies, had coffee, took a pain reliever and by the evening the headache came back. That night, I yelled in my sleep and my wife woke up to find me unresponsive. A CT scan revealed that I had a brain bleed, I was admitted to the ICU and a stint was implanted. Through that procedure, doctors discovered abnormal blood vessels in my neck, which triggered follow-up appointments, meeting with a geneticist and receiving a diagnosis.

 

What was your experience after being diagnosed when living up to your expectations as a dad and husband were so important to you before? 

It was a struggle in the beginning and still presents opportunities for me to work on today. I put a lot of emphasis on what a good father and husband looks like and once I realized those were just my expectations and not who I needed to be, which helped have an overall change in mindset. My wife, family and friends also play a big role in my continued change of mindset. 

 

How have you adapted the way you interact with your son?

Since he's little, most activities we do are adaptable. With the mobility issues that resulted from my strokes, I have found ways to play, sitting in a chair so I don't have to stand. I appreciate the family support we have with caring for my son. They help him with the things I can't and I stay focused on what I can still do for him. Even though he's two years old, it's been helpful to be honest about the boundaries and what is and isn't okay to do with me.



LINKS & RESOURCES MENTIONED

Jireh on Instagram

https://www.instagram.com/hello_my_name_is_jireh/

Rare Is Everywhere book by Deborah R. Katz

https://bookshop.org/p/books/rare-is-everywhere-deborah-r-katz/14471617

Fabry Support & Information Group

https://fabry.org/

National Fabry Disease Foundation

https://www.fabrydisease.org

AllStripes

https://www.allstripes.com/

Global Genes

https://globalgenes.org/



FOLLOW ADAM JOHNSON

Twitter @RareDiseaseDad

https://twitter.com/rarediseasedad 

Instagram @RareDiseaseDad 

https://www.instagram.com/rarediseasedad/

LinkedIn

https://www.linkedin.com/in/adam-johnson-8a1473125

 

CONNECT WITH MITOACTION

Website

https://www.mitoaction.org/

Facebook

https://www.facebook.com/mitoaction

Twitter

https://twitter.com/mitoaction

Instagram

https://www.instagram.com/mitoaction/

LinkedIn

https://www.linkedin.com/company/mitoaction



Other Episodes

Episode 115

August 07, 2024 00:35:57
Episode Cover

Being A Mother and Physician and Struggling with Mito

ENERGY IN ACTION - EPISODE 115 Being A Mother and Physician and Struggling with Mito   Rachel balances caring for herself as a mito patient,...

Listen

Episode 24

May 12, 2021 00:40:32
Episode Cover

Patients as Partners in Ultragenyx LC-FAOD Research

Join Energy in Action host, Stephanie Tomlinson as she interviews Emil Kakkis and Jessica Riviere from Ultragenyx Pharmaceutical. On this podcast, Ultragenyx will share...

Listen

Episode 90

July 22, 2023 00:47:04
Episode Cover

Akron Children’s Hospital Mito Clinic Research Update

ENERGY IN ACTION - EPISODE 090 Akron Children’s Hospital Mito Clinic Research Update   I'm joined by Dr. Bruce Cohen, Dr. Matthew Ginsberg and Clinical...

Listen