Juvenile Hemochromatosis

Posted by Marcy @mkempson42, Jun 18, 2023

Hello I was wondering if there is anyone diagnosed with the blood disorder, Juvenile Hemochromatosis? And if they are have experienced (R) lower extremity swelling with inflamation only. I was told this was a sign of problems pertaining to your liver and I have had this on going issue for 2 years now. Any thoughts would be greatly appreciated. Thank you.

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John, Volunteer Mentor | @johnbishop | Jun 18, 2023

Hi Marcy @mkempson42, I did a search of Connect and didn't find anyone who has posted about Juvenile Hemochromatosis but there may be members with experience and hopefully they will see your discussion. I'm not sure if you have seen the information on the National Organization for Rare Disorders NORD so though I would share it just in case.

--- Juvenile Hemochromatosis: https://rarediseases.org/rare-diseases/juvenile-hemochromatosis/

Has your doctor or care team suggested any treatment or therapy?

Marcy | @mkempson42 | Jun 18, 2023

In reply to @johnbishop "Hi Marcy @mkempson42, I did a search of Connect and didn't find anyone who has posted..." + (show)

I have a new doctor that I'm waiting to see for further evaluation of this.

John, Volunteer Mentor | @johnbishop | Jun 19, 2023

In reply to @mkempson42 "I have a new doctor that I'm waiting to see for further evaluation of this." + (show)

Do you normally plan your conversations with your doctor? I've found that helpful to make sure that I don't forget to ask some specific questions that I was trying to get answered. I found this site quite helpful for coming up with a plan for my discussion with a specialist - https://www.patientrevolution.org/tools.

Marcy | @mkempson42 | Jun 26, 2023

In reply to @johnbishop "Do you normally plan your conversations with your doctor? I've found that helpful to make sure..." + (show)

Yes and I've also subscribed to the ornament app that stores your bloodwork and does a full system work up based on biomarkers, your age, gender, and basic overall health with past and current health issues and comes up with a personalized profile to help prepare for upcoming doctor appointments on what it thinks maybe should be evaluated or various blood test to discuss during your visit. I'm very impressed with this app and recommend to others who are trying and/or newly diagnosed and are in need of organizational help(what I refer to as ..their own personal assistant bc it is a bit scary and overwhelming at times ).

Marcy | @mkempson42 | Jun 26, 2023

In reply to @mkempson42 "Yes and I've also subscribed to the ornament app that stores your bloodwork and does a..." + (show)

And as with my situation and am sure many others I seemed to be plagued with persistent reoccurring brain fog and is most helpful in that aspect.

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