Thyroid Cancer

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Genetic testing for the parents of a fanconi anemia child # fanconi anemia

Hi! I have 5 children and I’m 42. In 2006 my daughter had her stem cell (unrelated ) bone marrow transplant. She did very well long story short she is now 22 and has had skin cancer and was treated with removing the cancer. Now she was just diagnosed with thyroid cancer. Also something is going on with her liver, continuos elevated liver enzymes. We’re waiting on results from a ct at this time. February 12 she sees the doctor for a surgical consult and then will receive radiation
I’m worried since there still isn’t much research on how they are doing as adults
Also my youngest son has another inherent disease called hyperlipidemia. He sees a cardiologist annually to see when he will need medication for this. My daughter was diagnosed by geneticists. I requested a referral today to see a geneticist to see what I’m predisposed to. (I took my data from ancestry and uploaded it to genapp. And it’s loaded with all the genetics stuff. I have 9 dominant disease that I carry (not sure which will be the one that affects me)
I plan to show the geneticists. My whole family has all sorts of disorders mental and physical and quite a bit are hard to diagnosi. Especially with the auto immune area

Has anyone done this? Does anyone have an adult child after their transplant ? I would love to know how they are doing…any advice or tips?
Thank you

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Highly recommend the Netflix documentary Take Care of Maya about a young woman w/ CRPS and the aftermath of her medical "care":

Chronic Regional Pain Syndrome aka CRPS is yet another poorly understood, pernicious illness that disproportionately impacts women and girls. In this case, it led to an utter fucking nightmare for both the patient, Maya, and her family. The film expertly depicts the hell that results when physicians don't believe the patient and wrongfully dismiss debilitating physical symptoms.

It might hit too close to home, so proceed accordingly.

I've been too ill to write here for the past two weeks--the symptoms from the M.E., cancer, and heart attack are currently wreaking utter havoc w/in my body. So maybe it was an odd choice to watch Take Care of Maya tonight. On the other hand, I believe information is power and that it's valuable to keep learning how and why a medical system that's ethically and legally obligated to help instead too often harms so many of us:

www.youtube.com/watch

Day 45 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #ThyroidCancer #Cancer #CRPS #chronicregionalpainsyndrome #ChronicIllness #HeartAttack

Take Care of Maya | Official Trailer | Netflix

When 10-year-old Maya Kowalski was admitted to Johns Hopkins All Children’s Hospital in 2016, nothing could have prepared her or her family for what they wer...
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What’s your oldest diagnosis?

The majority of our Mighty community has been diagnosed with 3+ health conditions, and many of us have lived with those conditions for over five years. We’re curious what your oldest diagnosis was? If you’re comfortable sharing, how old were you at the time?

Here is a diagnosis roundup from Mighty staff: bilateral vestibular loss, spina bifida, OCD, ADHD, and thyroid cancer.

✏️ P.S. Answer with the first formal label you received vs. when you started experiencing symptoms (that’s a whole other post for another day!).

#MightyMinute #CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #Disability #RareDisease #Autism #ADHD #Cancer

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A close friend just asked if she could pick up groceries for me while she's out running errands and it has restored my will to live:

One of my closest friends just checked in because she knew there were still more tripwires with UW Medicine today--phone calls and MyChart messages that seemed specifically designed to go in circles--and because she has lived her own version of this story, she knows firsthand it's grueling.

So, she said to text her my grocery list tomorrow and that she'll pick up everything when she's running errands.

This is basically Nobel-level friendship--seriously, why no prizes for stuff like this?--and I love her so freaking much.

My physicians seems to have no clue whatsoever that living with Myalgic Encephalomyelitis, thyroid cancer, ongoing radiation complications, severe Orthostatic Intolerance, and the aftermath of a small heart attack can be dicey most days. They're obtuse in a way that'd be awe-inspiring if it weren't so dangerous.

But I still have many loved ones who do, in fact, get it--my mom checked in today, too--and I'm deeply, unendingly grateful.

Day 20 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #pwme #cfsisamisnomer #ChronicIllness #ThyroidCancer #Cancer #Disability #Love

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More material errors today: I swear to god I could visit my nephew's 7th grade Biology class and encounter more astute scientific minds:

Mark Twain once wrote, "Give a man a reputation as an early riser and he can sleep 'til noon."

For a long time, UW Medicine was known as a top-tier medical facility.

But in recent years--and this started before the pandemic--they've been on a downward slide. One of their residents even confided in me last year that UW's lack of communication among clinicians was alarming to her.

Today was a loooooooooonggggg day, so I'll leave you with this:

UW Medicine is, at this point, definitely a late sleeper.

I'm curious to learn how much longer they can coast on their reputation as an early riser.

Day 19 of 365

#MyalgicEncephalomyelitis #ThyroidCancer #Cancer #ChronicFatigueSyndrome #cfsisamisnomer #pwme #Disability #ChronicIllness

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Happy 2024, all! Hope you're feeling as well as possible! Here's an interview I just did w/ the M.E. podcast Post-Exertional Mayonnaise (get it?)

Daniel Moore is a British musician who had Myalgic Encephalomyelitis as a child, seeming got better, and then experienced a return of the illness in 2018.

In 2023, he co-founded the M.E. podcast Post-Exertional Mayonnaise to discuss M.E., music, writing, grief, and whatever other topics might pop up.

He's a good, smart person and I appreciated his questions.

On my living w/ M.E. for 32+ years, thyroid cancer for seven, the small heart attack, my first book Altitude Sickness about my best friend's death from mountain climbing, and my upcoming book Fire in the Hole: A Eulogy for the Living on the massive catastrophe of M.E.

On YouTube:

www.youtube.com/watch

And on Spotify (it's available wherever you get your podcasts):

open.spotify.com/episode/7x8qVAJhNjKmddhXnUY5J9

It's hard to be human and it's vastly harder to be a sick and/or disabled human, so I hope your new year is off to the best possible start and that the world is treating you w/ the kindness you deserve. All the best. xo

Day 18 of 365

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #cfsisamisnomer #pwme #ChronicIllness #ThyroidCancer #Cancer #HeartAttack #Writing #Music #Disability

Litsa Dremousis: Author, Essayist and Activist on writing and life with ME

Listen to this episode from Post-Exertional Mayonnaise on Spotify. Daniel is joined by Litsa and her dog Jordan (who she describes as an inveterate cuddler and the primary reason she's alive). Litsa shares from her 30 year history of life with ME and we explore how she's navigated a writing career: interviewing famous music artists, publishing her own deeply personal stories, and raising awareness of the reality of ME at the highest levels. Millions missing episode: https://open.spotify.com/episode/1adUN7Qd0Quli2KEGbrvTx?si=EvhKekMJShyWkSD39RFzXw https://litsadremousis.com/ Susan Sontag (illness as metaphor) info: Illness as Metaphor https://g.co/kgs/JFg1yh Get in touch: pempodcast23@gmail.com https://www.pempod.com/
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Who am I and what am I doing here? My new daily blog on Myalgic Encephalomyelitis:

Hello, all! Hope you're doing as well as possible navigating the holiday miasma in an uncooperative body.

Earlier in the week, I began writing an M.E. blog here. Fingers crossed, it'll be daily.

I've had M.E. for 32+ years, thyroid cancer for seven years (the thyroidectomy and radiation didn't get rid of the cancer, but they did cause myriad ongoing complications), and a little over a year ago, I had a small heart attack. (This isn't as random as it sounds: research has shown that persons w/ M.E. have increased rates of cancer and of heart complications.)

I'm a longtime writer who's written each word from bed (please see my bio below), lifelong Seattleite, and guardian to my dog Jordan, who's a beacon of all that's good and true.

My health continues to decline--lately at a quickening rate--and I want to write about M.E. in real time here and, also, meet some other salient humans fighting many of the same battles.

All the best to each of you,

Litsa

Day 5 of 365

Litsa Dremousis is the author of Altitude Sickness (Future Tense Books). Seattle Metropolitan Magazine named it one of the all-time "20 Books Every Seattleite Must Read". Her essay "After the Fire" was selected as one of the "Most Notable Essays 2011” by Best American Essays, and The Seattle Weekly named her one of "50 Women Who Rock Seattle". She is an essayist with The Washington Post.

Her work also appears in The Believer, BlackBook, Esquire, Jezebel, McSweeney's, Monkeybicycle, MSN, New York Magazine, Nylon, The Onion's A.V. Club, Paste, PEN Center USA, Poets & Writers, Publishers Weekly, The Rumpus, Salon, Spartan Lit, The Weeklings, in several anthologies, and on NPR, KUOW, and additional outlets. litsadremousis.com, @LitsaDremousis.

#MyalgicEncephalomyelitis #pwme #cfsisamisnomer #ThyroidCancer #Cancer #HeartAttack #ChronicFatigueSyndrome #ChronicIllness

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