User:DHNFCD Advocate

Help is required. I have plenty of "Never done before" challenges ahead, upsetting or violating this fine community is NOT one of my goals. Many have, the first thing I do here will not be to make that mistake. I'm teachable. Who I am is No Secret. Uniqueness is not, by default, an asset. Lemons and lemonade right?

I'll draft an article, with added references and such after some input from the wise and experienced. I have a lot of references.

DHNFCD - Six letters, three rare genetic conditions, CURRENTLY - two people, One Mutant Father, One Hereditary Son, One Planet. Stats and Statistics - feel free to verify if you are not familiar. 1 in 3,000 have NF1, 1 in 100 have CD and 1 in 5 of those Celiacs have DH. Simple math; 3000 x 100 is 1 in 300,000 have NFCD 300 x 100 x 5 is One in 1.5 Million have DHNFCD 330 Million US Citizens? 1100 with NFCD and 220 with DHNFCD and yes, my son and I are the only two diagnosed. I'm working on it. ICD codes are a start. International Classification of Diseases or Insurance Billing Codes in the US.

For me, being anonymous is NOT possible, self promotion is NOT the goal. When I get ICD codes defined for NFCD, DHNFCD, Anaphylactic Celiacs and Mandatory Gluten Free Prescriptions for ALL Diagnosed Celiacs, Nobody will hear from me again. I am a very private person and resent having to become this. Nothing more American than Doing It Yourself. The Patient is the Expert. I'd rather be building guitars.

Suggestions of similar articles that are successful with impossibly personal balancing would be helpful.

First - How would you suggest I present my first article? I thought about doing a "simple" History of DHNFCD, it would be the least confrontational and least personal. I can reference and discuss the history of each genetic condition, when they were first documented, treatment history and people involved. All with proper references, Louis Adolphus Duhring, Friedrich Daniel von Recklinghausen, and Aretaeus of Cappadocia. While a case of the combination of the three has never published in any medical journal in the world, the first case of NFCD was published in 2005, Italy. 2008 BC, Canada is the second, Ireland 2013 the third and the only familial case being in Russia in 2015.

And thereby we get to MY TRUE MOTIVE. I need access to more research, I have yet received a copy of the entire Russian case study.

A 42 year old father and two children, I need to confirm IF Dermatitis Herpetiformis is referenced. Beyond curiosity, I need to verify that there are TRULY no published cases of DHNFCD. I have not found a single reference to a DHNFCD case yet, NIH conformed my research when they provided the Ireland NFCD case study, it was published under stomal tumors with reference to the NF1 and CD being involved in the development of that case.

Make no mistake, I am the Only Person in this Country to Identify anyone with DHNFCD. If you do not understand how, I'm pretty sure that is one of the points of my participation here. I am the only person researching NFCD or DHNFCD. I am, as far as I know, the only living Diagnosed Anaphylactic Celiac, that page can wait, I need to get my son an experienced doctor first. Why, yes, this is our reality, The Living Definition of the Burden of Knowledge. I am 54, my son is 32, we were diagnosed at MD Anderson 30 years ago with NF1 and I have been researching our health issues ever since. Why? Tell me - Who else is going to do this? Seriously, I want just one name out of 7 Billion People, one person to have an educated conversation with. With this communities assistance, that day may come. HIPPA is for you, not me, Anaphylactic Celiacs want everyone to KNOW why NOBODY should expose Celiacs to Gluten. Ever. It's kind of important. Thanks - S'ean - THE Anaphylactic Celiac, THE DHNFCD Advocate, Parent, Expert Patient, Researcher, Publisher and Political Activist.