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A change in N.A.D.F. Conn's description

Posted Jan 19 2012 12:34pm
When I was at my sickest, I was desperate for whatever information I could find. I went on every site that had the word Hyperaldosteronism in it. What I found was a lot of confusing sites that had brief symptoms listed, namely that this disease only causes high blood pressure and lowered potassium levels, for example on the National Adrenal Disease Foundation's site (N.A.D.F.). This frustrated me a lot as I had so many other symptoms like migraines, severe fatigue, brain fog, numbness in limbs and concentration difficulties. So why are these so-called professional, medical sites not better researched and written? And what's with the N.A.F.D. Shouldn't they have the full picture on adrenal diseases?

Yes, I believe they should. And so I did something about it.

Last month, I contacted Dr. Paul Margulies, chief endocrinologist at the N.A.D.F. and asked him to please change the symptom description for Conn's to reflect the reality of the disease. The following is a response I received, January 5th
Dear Ms. Langrall,

Thank you so much for contacting the National Adrenal Diseases Foundation (NADF); a non-profit organization dedicated to providing information, education and support to persons with adrenal disease.

Your e-mail was presented to Dr. Margulies, and at your urging, he reviewed NADF's 'Hyperaldosteronism: The Facts You Need To Know', and made some changes. The text file of the revised NADF hand-out is attached in PDF format.

If you would like NADF to have detailed informational items for hyperaldosteronism, feel free to author something, and after it's presentation and okay by Dr. Margulies, we feasibly might add it to the information we display on our website and distribute to patients. Thank you!

And thank you so much for your activism on hyperaldosteronism patients' behalfs!

Also attached to this e-mail, please find copy of our latest newsletter (membership application on the back page). If you choose to join NADF, you will automatically receive a copy of NADF News® quarterly.

Thank you again for contacting NADF with your concerns! Best of health and luck to you.

Melanie Wong
Executive Director
National Adrenal Diseases Foundation

Sadly, they did add the other symptoms, but also stated "MOST" patients did not suffer from these. I intend to respond and ask for the word "most" to be replaced with "some". The number of people that contact me on this site have suffered too much not to be listened to.

While the new description is not perfect, it is an improvement. That they actually read my letter and responded to my complaint is encouraging.

One thing to take into consideration when visiting the N.A.D.F. site, is that it was started to help Addison's suffers. There is more information for them than the Cushings and Hyperaldosteronism (Conn's) folks. This is very common. I believe we will see more Conn's cases in the coming years and by then, hopefully, there will be better guidelines and information.

Special noteI started this blog because of the lack of consistent information so I could help others who are also on this incredibly difficult journey. I plan to continue posting and providing support to fellow Conn's patients. And I will contact as many sites as I can to make sure others don't have to feel like something is wrong with them due to inaccurate descriptions.
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