Frank Ritchie talks fighting to get his daughter’s Ehlers-Danlos syndrome taken seriously - Ask Me Anything

17-year-old Selah Ritchie with her father Frank Ritchie and mother Melva Ritchie. Selah had surgery earlier this year in Germany to combat the effects of Ehlers-Danlos syndrome.

A radio host who went public with his daughter’s journey with Ehlers-Danlos syndrome has spoken of how traumatic the experience was, and his disappointment at having to use his privilege to “rage” at the health system.

Reverend Frank Ritchie, an ordained minister with the Wesleyan Methodist Church, is the co-host of Newstalk ZB’s Sunday at Six and lead chaplin of Media Chaplaincy NZ. In recent months, though, he has gone public about his daughter Selah’s health journey after she was diagnosed with Ehlers-Danlos syndrome (EDS).

EDS is a condition that affects connective tissue and can present as abdominal pain, as it did for Selah, but many women living with the condition struggle to get diagnosed.

Speaking to Paula Bennett on her NZ Herald podcast Ask Me Anything, Ritchie said after Selah presented with abdominal pain, it was initially treated an issue with her appendix, but a few months after having an appendectomy, she stopped being able to eat.

After a series of tests, it was found she had an obstruction on her small intestine, and it was ultimately discovered she had vascular compressions and EDS.

Before that though, Ritchie said one doctor late in the process asked Selah to leave the room, and he and his wife were asked if there were concerns it was an eating disorder.

Ritchie said this highlights the difficulty many women have with getting diagnosed with EDS.

“I think we need to put the psychosomatic diagnosis aside and it should be an extreme last resort. I think we need to recognise that if someone’s feeling abdominal pain, particularly young women, their systems are complicated and it’s very clear that we don’t understand them very well.”

The lack of seriousness given to the condition is what prompted the family to fundraise in order to fly Selah to Germany, where specialist teams were able to perform surgeries that have left her feeling much better.

Ritchie told Bennett he had to “rage” to get Selah’s pain taken seriously.

“It’s a sad reality that those who agitate seem to be the ones who are able to get what they need.

“And I like to be a really polite guy, I like to be the one who doesn’t rattle the cage. But I found out very quickly that in order to get what my daughter needed, I needed to rage a little. I needed to sometimes take the rage that I was feeling, know how to control it and use it to get what she needed, even if that meant I got looked at as a bad guy.

“Now I say that as a middle-class, white, middle-aged male, and I know that I’m going to be listened to. I know that when I push, I expect that people are going to take notice and hear what it is that I’m asking for. And that leaves me very concerned about people who are from cultures or ways of being or backgrounds that leave them quiet in the face of that need.”

While Selah is feeling better now after her surgery, Ritchie said the family is still working through the trauma and PTSD from the process. He recalled how tough it was watching Selah in pain after the surgery as they rebalanced her medication.

“I remember going back to my hotel room, going into the bathroom and crying because I was just... I wondered if we’d done the right thing. Like, ‘What are we doing on the other side of the world? They’ve cut my daughter open, and look at how she’s doing’. But now, the proof is in the pudding.”

The family is going through counselling now to deal with the experience, but Ritchie believes it has made them closer as a family.

“I already loved, respected and admired my wife, but I would say [I feel that] so much deeper and richer now.

“And I watched my daughter over the last months advocate for herself and find her voice as a 17-year-old, and watching her strength, her willingness to go through the hard things, I think she’s well set-up for life, and I deeply admire her too. But it’ll be a process of working all that through.”

Listen to the full episode for more from Ritchie about his family’s health journey, plus his thoughts on recent media cuts and the changing role of religion in New Zealand.

Ask Me Anything is an NZ Herald podcast hosted by former Deputy Minister Paula Bennett. New episodes are available every Sunday.

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