Alicia Cambreleng's Dermatomyositis Fund

Adam Cambreleng is organizing this fundraiser.

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Phew, man, this is one of the hardest things I’ve ever written, and the fact that it's still ongoing makes it even worse.

You may not know my wife, Alicia, or how vibrant, funny, adventurous, beautiful and glowing she is. If you do, then she doesn't need any introduction; if you don't, let me tell you about a woman who lights up a room and whose artistic drive has taken her from managing art galleries to creating fine jewelry.

Alicia isn't a person who complains, ever.

Even when she doesn't feel well, she's unnervingly stoic in her ability to deal with things without making it other people's problem (Not even doctors). She's sent me pictures of jewelry saw blades running clean through her finger. Her boss made her visit urgent care because she would rather have yanked out that piece of metal and wrapped green tape around her finger so that she could press on and continue working. Why?

Because work needs to get done.

I bring this up because starting at the end of November in 2023, we noticed a strange rash on her arms, chest, neck and face. After allergy remedies failed, the rash worsened, eventually breaking out into blisters covering most of her forearms. Additionally, she started feeling incredible weakness over her entire body, focused in her arms, hips and neck. Urgent care was a bust, but recommended she see a specialist. Alicia visited the dermatologist immediately, but he was also at a loss. He took biopsies of her tissue, took dozens of vials of blood and consulted a colleague in London.

But Alicia still didn’t get a diagnosis.

Alicia’s symptoms kept worsening. The muscles in her throat were so weakened that she started sounding like a different person. The rash progressed further on her face and, worse, the back of her neck, causing blisters that ripped open leading to intense pain and the possibility of infection. Another twist was that Alicia’s muscle pain started to show on her biceps and forearms, leaving them black and blue. Worse yet, behind those bruises were hard deposits that we still have yet to identify. If she moves even a little bit, she is gassed and completely exhausted and has to take time to recuperate.

Finally, the dermatologist referred Alicia to a rheumatologist. After extensive testing, the rheumatologist found that, unfortunately, Alicia has a rare Auto-Immune disease called 'Dermatomyositis', a disease so rare that only 9 in 1 million are diagnosed with it. So rare, that even those statistics are only estimates because most doctors aren't qualified or knowledgeable enough to identify it.

If it wasn't already absolutely devastating, what came next was the coup de grâce... Alicia would not be able to work any longer because her muscles would most likely start to experience even more severe degradation.

Even with aggressive treatment, it will be at least 6 months before Alicia begins to feel any relief. And even then, most people saw miniscule levels of improvement, not a return to normal. The disease is lifelong, with no cure and no way to predict its temperament or possibility of flare up.

People sometimes get back 80% of their functionality over the course of 2 to 3 years. Some fair better. Some fair worse.

Getting this diagnosis was life-altering. Not in an existential way, in a real, tangible way. Alicia loves her craft: being a jeweler and working with other creatives to make beautiful art and maintain existing pieces of art so that their owners can enjoy them for eternity. She had found a job where she worked with people who treated her like family and who she viewed as family in return.

And now Alicia will have to leave, not because she wanted to, but because her body simply cannot handle even the slightest use of her muscles.

Devastated doesn't even begin to describe her feelings.

Then comes the rest of life. How do you live? How do you contribute to your household? What do you even do?

Well, we're trying to figure that out right now, and we don't have a ton of answers either. What we do know is that we are surrounded by amazing friends and family who are so incredible that there isn't a form of flattery high enough for them.

Part of figuring that out though also comes with the very real and serious issue of financial security. How can we facilitate paying for doctors' visits, purchasing meds, and just supporting the additional items that need to be taken care of?

That has led me here, to GoFundMe, a site I've donated on before but never thought I'd be posting on. I'm not sure if I'm doing everything right, but both Alicia and I know that while Disability is a forgone conclusion at this point, there's a lot of time and fighting involved to get that moving.

My hope is that in the meantime if you, the person reading this, has the means or desire to assist one of the most profoundly amazing human beings on the planet then I would be eternally grateful.

I understand circumstances, and I know that not everyone can... please, know that we love you with all of our heart even if you can't. Just taking the time to read this or giving it a spare moment of your time makes us feel very humble.

I know that we will fight this, and anything you donate will go to doing just that. Ensuring that both Alicia and I are able to fight, live and get through this.