Talk:McCune–Albright syndrome

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Above undated message substituted from Template:Dashboard.wikiedu.org assignment by PrimeBOT (talk) 03:41, 17 January 2022 (UTC)

I'm not sufficiently knowledgeable to correct it, but McCune-Albright syndrome (which BTW is often just refered to as Albright synd in pathology texts) is a type of polyostotic fibrous dysplasia. That is, they are not synonyms. 140.254.207.209 21:52, 20 May 2007 (UTC)

Fixed. --Arcadian (talk) 02:38, 24 February 2009 (UTC)

PFD/MAS

I am a 57 year old with Polystotic Fibrous Dysplasia and McCune Albright Syndrome PFD/MAS. This is a complex disease that presents different aspects in individual patients. Often there are endocrine and cardiac issues that can be connected back to ones' having the disease.

Depending upon where the tumors are located, one can lose sight and or hearing. The triad of cafe o latte skin pigmentation, endocrine issues and Polystotic, or multiple tumor sights has been disproven. Patients may not have all three but for the most part they will always have the multiple bone tumors associated with PFD.

Patients with this disease may actually present with symptoms that appear like the patient may have several different unrelated ailments but further testing can tie the multitude of symptoms together. A bone endocrinologist is a critical specialist to have on the medical team. Few doctors have ever heard of FD/PFD/MAS, fewer yet have ever seen a patient suffering from it.

There is a risk of death with PFD/MAS through a sudden cardiac death. There is also a relationship between PFD/MAS and HBP and cardiac arrythemias. I am a lay person reporting from my own personal experiences from a life with this disease.

184.63.175.172 (talk) 03:45, 14 November 2012 (UTC)I'm 34 and I just found out that I have Polyostotic Fibrous Dysplasia and McCune Albright Syndrome, so apparent on the CT and MRI no test should be necessary. How in the world do I prove to Social Security the severity of this? I've suffered since before I was born. I had a stroke like infarction 08/15/12 and the ER sent me home paralyzed on the right side but able to crawl to me car. They called it a non-specific headache and told me I had scar tissue on my brain. Strangest thing was that so called scar tissue was squeezing so bad behind my right eye I thought I would die. My tongue swelled up and I thought I was choking. I couldn't move nor talk right. The ER ARNP thought I was in process of a stroke, but before I got to CT the squeezing stopped. Before I got to MRI I could walk folded over, still paralyzed on the right side. :( It hurts so much to know this Syndrome in kinda thrown under the rug and no one has a clue how to deal with it. It's the cap to my life history. GOD was good to me and calmed my screaming at age 3 and I was great until age 12. I never grew again, but with the thyroid problems I became 100 heavier in one summer and have been morbidly obese since. GOD has gave me all that I lost; however, I still battle memory loss, burning of brain and seizure like episodes and docs assure me this isn't life threatening????Will my life get better? How do you find a BONE ENDOCRINE DOC? Thanks! 11/13/12 TanyaBW in FL184.63.175.172 (talk) 03:45, 14 November 2012 (UTC)

Free image available

There's a free image here:  http://www.ojrd.com/content/3/1/12. I just don't have time to upload it right now. If you'd like to upload it but don't know how, I'm glad to help, just drop me a note on my talk page. delldot ∇. 05:33, 14 October 2008 (UTC)

Unstoppable in Stilettos

Lauren Ruotolo, afflicted with McC-A syndrome, wrote a book called Unstoppable in Stilettos. Probably qualifies as a notable case - hit the bestseller list. —Preceding unsigned comment added by 99.48.75.121 (talk) 22:07, 7 March 2011 (UTC)

March 3, 2016 edit

Doc James, I just noticed this edit by PedsBoneDoc (talk · contribs). What do you think of it? Flyer22 Reborn (talk) 00:16, 29 October 2016 (UTC)

Not sure. Restored part of it. Doc James (talk · contribs · email) 02:58, 29 October 2016 (UTC)

Okay, Doc. Thanks for looking into it. Flyer22 Reborn (talk) 03:10, 29 October 2016 (UTC)

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Jan, 2018 edit

IntothesameImage edits added appropriate organization and were concise and neutral. — Preceding unsigned comment added by Gomer2 (talk • contribs) 16:49, 4 February 2018 (UTC)