New Hemochromatosis Links, Blogs, Interviews, Discussions
This post is a quick update to let you know we're still here and still working on raising awareness of hemochromatosis, even though the twin demands of the "day job" and coping with HH have been taking up most of our time (that's why there's no fancy image to go with this post).
Fortunately, we are not alone, and hemochromatosis sufferers don't have to go it alone. There are places to turn for advice, insight, support, and maybe even a smile or two. Places like My Dog's Teeth, a blog written by Cristi-Rae Baird, a young Canadian HH patient. Here are links to Cristi's site and several other HH-related places you might not know about. They are all worth checking out.
Finally, sadly, there is one bunch of links you probably don't want to click. They refer to something called The Iron Overload eBook by Linky Muller. I am seeing a lot of spam tweets for what seems to be a $37 electronic book that probably has less useful information in it than the medically reviewed Iron Disorders Institute Guide to Hemochromatosis that you can buy in paperback on Amazon.com for a lot less than half that price, and as an eBook on Kindle for $9.89. I would be happy to be proved wrong. I am standing by to review the book if the author would like to send me a copy. I certainly sympathize with anyone who has HH and am grateful to all who tell their story, but this does not seem like the way to do it.
(FYI, a spam tweet is created by an automated system of fake accounts that have a human name followed by a number, like Colettaj339. When you check out the profile you see this person has a. sent many tweets, b. not followed anyone. The account merely exists to direct clicks to a promotion in return for money.)
Fortunately, we are not alone, and hemochromatosis sufferers don't have to go it alone. There are places to turn for advice, insight, support, and maybe even a smile or two. Places like My Dog's Teeth, a blog written by Cristi-Rae Baird, a young Canadian HH patient. Here are links to Cristi's site and several other HH-related places you might not know about. They are all worth checking out.
- The My Dog's Teeth blog: Cristi's personal account of living with hemochromatosis (and a dog). Cristi's in-depth interview with Jillian is well worth reading.
- The MisAdventures of Bad Boy Kimball: a personal blog from Steve Kimball, writing about coping with hemochromatosis. My wife and I can totally relate to Steve's post on family notification!
- The Iron and Sunshine blog: About living with hemochromatosis (and the bright side of Navy life, and love, in Hawaii). The blog's author, Jillian, interviewed Cristi and the resulting post offers interesting personal and international perspective on coping with HH.
- The Iron Gal blog: A new blog by Meg. You have to love the title and tag line "Hemo...chroma...WTF?"
- The hemochromatosis forum at Daily Strength: A growing community of HH patients offering mutual support.
- Discussions on the Hemochromatosis Facebook page: These continue to grow and you may find that reading past discussions not only helps you understand what others are going through, but can help you to cope with what you're having to handle in your own struggles.
- The Iron Disorders Institute website: This is the place to turn for solid medical advice on all things hemochromatosis, including anemia and over-bleeding. Everything on this site is reviewed by HH experts and although it may take a little digging, you can probably find answers to most of your medical questions here.
- Facebook page for Hemochromatosis Society of New York: Started by Ted Scheriff to provide mutual support to HH sufferers in the area.
Finally, sadly, there is one bunch of links you probably don't want to click. They refer to something called The Iron Overload eBook by Linky Muller. I am seeing a lot of spam tweets for what seems to be a $37 electronic book that probably has less useful information in it than the medically reviewed Iron Disorders Institute Guide to Hemochromatosis that you can buy in paperback on Amazon.com for a lot less than half that price, and as an eBook on Kindle for $9.89. I would be happy to be proved wrong. I am standing by to review the book if the author would like to send me a copy. I certainly sympathize with anyone who has HH and am grateful to all who tell their story, but this does not seem like the way to do it.
(FYI, a spam tweet is created by an automated system of fake accounts that have a human name followed by a number, like Colettaj339. When you check out the profile you see this person has a. sent many tweets, b. not followed anyone. The account merely exists to direct clicks to a promotion in return for money.)
If anyone is newly diagnosed and is wondering what to expect in the years to come...including having children and leading a "normal" life, I was diagnosed with PCT in 1998 and then HH in 2003.
ReplyDeleteive got it ..was 3ooo sefn now 562 ..after 24 p .
ReplyDeleteHi, I'm Cindy. Grateful to find a sight with apparently recent posts. I am an idiot when it comes to all this computer blogs, FB, Twitter,etc. so forgive me. I have been a Registered nurse for almost 30 yrs and had never heard of HHC. My story is a nightmare...probably 10 diff. MDs with no answers to my joint pain and destruction. Have had 7 ortho surgeries, (5 in last 4 yrs) and still need more. Had to finally stop working May of 2012 and file disability. Goal is to educate people and survive as well as have support. I will help as able (been through so much in last year it was only in August of 2012 that finally a local ARNP ordered correct labs to confirm already known Dx of genetic HHC and started Phlebs (ferritin over2500 and over 12 Tx still 100%sat)...Even the orthos who I told I had it, PooPooed this a cause. Along with so much judgement my pain complaints and need for pain control. This disease has affected my life terribly...and may be too late? But again anyway If (I hope) I can help the cause/educate/ bring awareness to etc. and or offer prayer, hope and support to others I will gratefully do so. I would welcome support from others as well. No one should suffer from or die from HHC (what I now know is so common and most oftened mis-diagnosed disease)! Thank you so much!
ReplyDeleteSincerely,
Cindy (Is there anyone out there???)
I have left 3 msgs with IDI (phone) never had a return call! What's up with that?
Can you donate blood or plasma with hemochromatosis?
ReplyDeleteGreat question Kenny, about which a whole lot has been written, basically because the answer depends on where you are trying to give blood. The "correct" answer is that hemochromatosis blood is ideal for donation and some enlightened health care providers make good use of it. Sadly, there are not enough of these enlightened folks and some clinics just throw away HH blood. There has been extensive discussion of this over on the Facebook page and I will try to add some links here when I get time. BTW, the answer also varies by country. Are you in US, UK, EU, Canada?
ReplyDeleteHello All. I am a 61 year old female and I was diagnosed with HH last Sept. My initial ferritin was 5,363. I just had phlebotomy #45 (weekly) and my ferritin has come down to 1,579. I am getting ready to do a happy dance when it gets under 1,000. I have one sister who is a carrier, and one sister who does not have the gene, but she has Von Willibrand's. My brother refuses to be tested. I have also been diagnosed as having cirrhosis. I am presently compiling all of the things that have occurred with HH, and I hope to write a book on it from the patient view. Like my doc who kept telling me to lose weight and exercise. My favorite line so far is "I said that my ferritin was high, not my ferret". I also want to do some tee shirt designs with the ferritin comment and also one that says "Having hemochromatosis is a draining experience" Any way, glad to have found this site.
ReplyDeleteHi I'm Paul aged almost 58 was diagnosed with the hereditary condition last year confirmed by DNA testing.
ReplyDeleteI've been having weekly venesections and my levels are decreasing but I have experienced extremely painful bouts over a period of years which were always non-specific. It includes angina, extreme pain in the middle of the upper back, shoulders, neck, armpits, down each arm into the fingers. It builds up gradually and sometimes I'm sure it will be the end of me it's so unbearable.
On two occasions my chest muscles froze and I had to gasp rapidly in fact they thought I was having a heart attack. I become disoriented and can only wait for it to pass.
My lungs are clear and there are no major heart problems so does anyone out there know if this can be linked to my hemochromatosis, at present my doctors seem baffled. Any info appreciated thanks.
Thanks for sharing Paul. My wife and I are of the opinion that iron overload can affect people in many different ways, in addition to, or besides the classic symptoms. Because so few doctors find HH to be 'sexy' and there is no research money for it, many complaints of HH patients are ignored. Our advice is to keep researching and try different doctors until you find one who takes a real interest.
ReplyDeleteWhat is desired ferritin level.
ReplyDeleteNaomi – Ooh, another granola recipe. I seem to be conelctilg them, so why not add another :) I made a different recipe yesterday and I love it, too. Granola IS the best.
ReplyDelete