A blog post by a husband (Phillip) currently serving in the armed forces in Iraq…
“Some of you know that Jessica has been sick off and on for the last year or more… the doc had diagnosed her with hypothyroidism, and put her on medication for 8 weeks before retesting and realizing that she didn’t have that disease.
A little while ago she got a kidney infection which led to some more testing with a different doc who thought she had a blood disease. They tested her for low iron in her blood, since that’s very common with people who have celiac disease, but they found that she has very high levels of iron instead. Latest diagnosis is that she has hemochromatosis - a disease where the blood doesn’t properly dispose of the iron in the blood. Eventually the blood starts depositing the iron into organs, such as the pancreas, heart, liver.
We’re not sure right now if there has been any damage to her organs. At the very least, she’ll need to get a pint of blood taken out once or twice a week for a year, then every 1-4 months after that and they should be able to keep it stabilized. She will go to a specialist when they can get her in- probably in a couple of weeks. The specialist will probably end up doing an endoscopy, colonoscopy, and liver biopsy.
I just wanted to let you all know what’s going on and ask that you keep Jess in your prayers. Her parents only live an hour and a half away, so they have been helping her out. I have been able to talk to her just about every day.”
Posted Friday February 13th 2009 - by The Cain Family
Dear Cain Family…
I am moved by your circumstances and your request for prayer for Jess. Her recent diagnosis of hemochromatosis is likely the underlying cause of many of the diseases she is facing. The good news is that she has been diagnosed and her physicians are continuing to do the diagnostic procedures to better establish her current condition.
I want you, Jess and her first relatives to go to our website and become well acquainted with this condition and what all of them need to know. Hemochromatosis is a hereditary disorder. This means that Jess’s parents are AT LEAST carriers of ONE of the two mutated genes that cause HHC. One of her parents may have both copies and thereby be at risk for the HHC too.
ALL FIRST RELATIVES, Jess’s parent’s siblings, their children, your children, Jess’s siblings ALL need to be genetically tested. This is the medical protocol in the USA and in many places around the world. You are looking to discover whether you have both copies of a gene called C282Y or H63D.
Also, since you have a blog and a heart for others… please feel free to spread the word about this disorder to your friends. One in 300 people in North America have this disorder and one in 9 is a carrier of one of the mutated genes.
I will watch your blog with interest and your family will be on my mind and heart.
Bob Rogers
CHS Executive Director
February 18, 2009
Cain family,
Please do follow Bob’s advise and read all you can about HH. Knowledge of what you are dealing with makes a huge difference in how you feel about this disease. It also helps in asking the right questions of your doctor such as “do I really need a liver biopsy?”.
What you will learn from the forum on this website is that you are not alone, many people are going through the very same things you are and in all different stages of discovery, treatment, and maintenance. The best part is that, while HH is something you have to deal with, the remedy is very simple and it does work and you can get on with your life.
Compare your numbers with some of those in the forum and you can get an idea of where you stand. Keep good records and remember that HH affects different people in different ways so that the “rules” that the doctors may go by should be thought of as “guidelines”. Take charge of your situation!
Don’t take for granted that your doctor knows everything about this disease because after you have done some reading you may know more and you know how you feel as well.
Wishing you the very best!
February 19, 2009
I started with a late diagnosis of 2350 nG/DL of Serum Ferritin. Just read my story and you’ll see that you are probably gonna be o.k. after you get the iron out of the system. One thing that has been SEVERELY lacking in online data is case histories of phlebotomy de-ironing; specifically, how much blood did one take out vs. what are their SF levels.
To give you a bit of encouragement, with Liver, Pancreas,and hormone damage, and being a full-on insulin dependent diabeted with cirrhosis as a consequence, I have dropped to 936 Sf as of Feb. 7th from a high of 2350. I’m below the “death zone” and once I get down to say 400 or so I’m on the home stretch.
To give you some EXTREME encouragement, my diabetes is recovering in fits and starts. Today is a bad day, but I normally have more good days than bad days.
The BEST news of all is that my last reading of 936 was 317 points below the PREVIOUS WEEK’S reading of 1253!!! Just goes to show a bit of experimenting with the phlebotomy protocol goes a loooooooong way to getting you de-ironed quickly, raising your recovery prospects.
Yes, test EVERY relative.
Best of luck!
February 20, 2009
When one first wears the diagnosis, one tends to feel bewildered and lost. It can be scary and one can feel quite alone. Your best reassurance and defence is to learn all you can and keep an accurate record of your numbers and all your treatment. The more knowledge you have, the more you will understand and be able to make informed suggestions about and for your treatment.
Once you get things sorted out and on the right track, things are pretty tame and one can carry on almost as a normal person.
Take care and ask questions!