Love in the Time of Cystinosis: How Battling a Rare Condition Lead to a Lasting Romance

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It’s hard enough to find love in this world.

Apps, matchmaking websites, and nosy friends can do their best to lend a hand – but at the end of the day, it’s a singular experience and a tough duty. And despite our many differences, we can all relate to the relentless hunt, the bad dates, deciphering code in texts and tones of voice, and the anxiety of the question – “In this big world, is that one person who I’m meant to be with really out there?”

Now imagine being sick on top of that.

Sometimes it may be hard to feel sexy or sometimes your schedule of treatments, symptoms, and side effects can add another layer to the complexity of finding love. And when is it the right time to disclose your diagnosis? Is your love interest even intellectually and emotionally capable of truly understanding what you’re going through?

The standard is higher and therefore the pool gets narrower; which is why Bryan and Alex’s story is that much sweeter and inspiring, an engaged couple who are both living with the rare condition cystinosis. Try and not relate to Bryan as he describes his first impression of Alex.

“My first impression of Alex was that she was very cute and a really nice, sweet person, and single!” 

Cute. Sweet. Single. The trifecta! Bryan is all of us.

A little about the disease: Cystinosis is a rare genetic disorder characterized by the accumulation of an amino acid called cystine in different tissues and organs of the body including the kidneys, eyes, muscles, liver, pancreas, and brain. The kidneys and eyes are the two organs most often affected, with many individuals requiring a kidney transplant, as both Alex and Bryan did.

Other symptoms include muscle wasting, difficulty swallowing, diabetes, and hypothyroidism. It is estimated that at least 2,000 individuals worldwide have cystinosis.

Considering how rare it is, it’s no wonder Bryan and Alex felt an immediate connection and attraction. They know exactly how the other feels, living with cystinosis. In fact, they met at the 2016 Cystinosis Research Foundation conference. It didn’t take long for them to date and get engaged.

When you know, you know.

And while of course their cystinosis paved the way for such a strong connection, they are so much more than that. Both love traveling, hiking/the great outdoors, and are self-proclaimed foodies!

“We are always trying to find a way to travel near or far and trying to find new experiences – whether it be trying new restaurants, sight seeing, or trying anything else new out,” beams Bryan. “Through all this we’ve both learned we love many different kinds of food!”

They have introduced each other to the wonders of hush puppies, biscuits and gravy, sushi, and cupcakes – just to scratch the surface. Those who eat together, stay together!

“Bryan has taught me to be more patient and has led me closer to God,” says Alex. “I have learned from him how to slow down and not let the little things bother me.”

Together – in between the fun trips and yummy food! – they help each other manage their cystinosis. When one starts feeling those symptoms, the other just gets it. Whereas others might have questions or confusion, they can lean on each other with few words or explanations. Even taking their medication – and dealing with the side effects – has become easier, since they now have each other to go through it with.

Between their health struggles and their shared interests and personalities – each has become almost like an extension of the other. And isn’t that what we’re all looking for?

“We have always been the type not to let our disease or anything else bring us down, but since we have been together have learned to enjoy life even more than we did before.”

And nothing is stopping them now! Their wedding is set for October of this year (2017), and they are looking to honeymoon in Charleston, SC. They also have a scenic cross country train ride on their radar, on top of their various hiking excursions they love. Plus they have hopes to start a family and are looking into adoption options! The future can’t look any brighter for these love birds.

Life can be tough, no doubt about it. But take it from these two – you are still ultimately in charge of the direction of your life. And while it may not be an FDA-approved therapy, it’s hard to ignore the effect being in love and having a partner can have on your disposition, mental health, and outlook on life – even while living with a rare or chronic condition.

Alex put it best, into great perspective:

 “ Even though having cystinosis can have its daily ups and downs, I would never want to take back having this disease because it not only made me who I am today but also led me to meeting my future husband and best friend Bryan.”

Cheers to these two!


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