Hemochromatosis Support Group
Hemochromatosis is a hereditary disease characterized by improper processing by the body of dietary iron which causes iron to accumulate in a number of body tissues, eventually causing organ dysfunction. It is the main iron overload disorder. Hemochromatosis is notorious for having symptoms that are often initially misattributed to other diseases.
Hello - I am wondering if anyone has had experience with the impact of meditation on their treatments, specifically on their Ferritin levels. I was diagnosed in Feb 2015 and have been having Phlebotomies every other week since, but hit a real plateau over the summer. I had changed my diet considerably, cut out all alcohol, was exercising, etc., but stayed at ~ 265 to 300 SF for a couple of months. Very discouraging. My doc recommended exploring "mindfulness" and meditation. So I have been meditating for the past 6 weeks or so and since then my levels have started to fall again even though I have eased up on the diet somewhat.
Has anyone else had experience with this? Wondering if it is just coincidence or if it's really making a difference somehow.
Thanks!
Has anyone else had experience with this? Wondering if it is just coincidence or if it's really making a difference somehow.
Thanks!
People seem to respond differently to treatment for HH and although there are some common HH symptoms, people seem to have different combinations of them. The recommended treatment for everyone with HH is the removal of iron to achieve safe levels.
Iron is stored in different parts of the body and repeated phlebobotomies / venesections will result in the stored iron being released and removed. For some people this process may be uneven and there may be plateaus or increases. For me, it was incremental but my ferritin levels were only 387 at diagnosis so with hindsight I was lucky, although I did take care with the things over which I had control, such as not cooking with iron cook-ware and staying away while my partner was restoring some iron furnishings.
Complementary therapies are not standard medical therapies but many people find them helpful for coping with the effects of treatment and to improve well-being. This is also the case for people with other medical conditions.
While it would not be responsible to suggest that complementary therapies are an alternative to medical treatment for HH as they will not remove excess iron from the body they are certainly important if they are found to be helpful.
I applaud anything that makes the life of people with HH a little easier, and I hope you continue to find meditation alongside HH treatment to be beneficial.
Christine
Certainly it is important to follow Western medicine, but I chose to believe that the mind and spirit are as important as the physical body. Also, I believe that many of the non-life threatening issues can be alleviated by other means than prescription drugs. I have made Qigong and acupuncture part of my treatment.
I must say I am a little annoyed by doctors who did not catch this and whose treatment of me is somewhat haphazard as they send me off to specialists that don't really understand HH--then I find myself explaining to/educating them.
I self-referred recently to the Mayo Clinic in Jacksonville, Fl that has a hemochromatosis clinic; I am really hoping that these specialists on the team will talk to each other and have me take only the tests I need. I am also looking for education and answers to some of the questions that are being asked in this discussion board.
I can report back when I return from Mayo.