As Haemochromatosis is a relatively unknown condition, those who are diagnosed with it are often concerned about the lack of available information and find a great deal of comfort in hearing the stories of others that have the condition. This page of our web site has been reserved to provide brief stories (anonymous or not) of those who have been diagnosed and treated for HH.
If you are willing to tell your story in a few paragraphs with or without a picture please contact the HSSA.
SEND US YOUR STORY TO HELP OTHERS!
SOUTH AFRICAN PERSONAL STORIES:
PERSONAL STORY 1 - In 2003 at the age of 56 I was diagnosed with haemochreomatosis. I had lived a very healthy and active life and the symptoms were very general and unspecific - a nagging stomach ache and some loose stool. Blood tests were ordered by my GP and showed that my liver enzymes were abnormal. The GP immediately suspected that I had a drinking problem. I was referred to a gastro specialist who performed scopes (top and bottom) and further blood tests. The iron profile showed a ferritin level of well over 1000 and the genetic tests that I was homozygote for the C282Y mutation of the HFE gene - I had haemochromatosis but fortunately with no apparent organ damage. I was put onto weekly venisections giving one pint of blood each week for 4 months. Since then I have been on 3 monthly bleeds and my blood tests have returned to normal. THANK HEAVENS for a doctor who knew about HH!
PERSONAL STORY 2: ARTHRITIS AND HAEMOCHROMATOSIS. In 1982 I was diagnosed with Rheumatoid Arthritis in the knuckles of my right hand, firstly by a GP and then by an orthopaedic surgeon. After initial treatment through cortisone injections into the joint, I was referred to a Rheumatologist who treated me with gold injections into the joints as well as oral medication. This method of treatment was featured on TV as being a major cause of stomach cancer and stomach lining damage amongst older people in Australia. Following the advice of a prominent local surgeon, this treatment was stopped. By this stage the arthritis had had manifested itself in the left hand, the right ankle and knee. I was referred back to the orthopaedic Surgeon who had originally treated me who put me back onto cortisone injections, anti-inflammatories and pain killers. In 2000, I was diagnosed with Hereditary Haemochromatosis (HH) – a genetic condition that caused the body to store excess iron. This was treated through 106 consecutive weekly venisections. The Professor treating me observed the degeneration of the joints (knuckles and fingers) on both hands. He advised that the destruction of the joints was not the result of common arthritis but was typical of HH and that no amount of gold injections or cortisone would help. During subsequent visits to my orthopaedic surgeon he said “I don’t know why I never tested your iron levels all those years ago!” My suffering could have been reduced and my condition treated much earlier if doctors had been alert to iron disorders. The degeneration of the right ankle joint as a result of HH, has recently led to a total ankle replacement! [This person had a liver transplant in 2008 and sadly passed away on 3 March 2009].
PERSONAL STORY 3 - I was diagnosed with HH about 4 years ago on a routine medical. I have had many medicals prior to this and it was never diagnosed. I initially had phlebotomies every 2 weeks then reverted to monthly. After consulting another doctor this was put back to every 2 weeks for about 6 months. I now donate blood as a regular blood doner 6 times a year. All my phlebotomies were done at the SA National Blood Transfusion Services as if they were normal blood donations and the process was simple and convienient. I have no other symtoms of HH.
PERSONAL STORY 4 – PCT AND HAEMOCHROMATOSIS. I was initially diagnosed with PCT (Phorfiria Cutanea Tarda) in 2005. This is a skin condition which can be acquired or inherited. Dermatologists at the Pretoria Academic were not interested in treating the condition as it is not life threatening. My GP had the same attitude: You've got it, live with it! As this is also a very rare condition, I was determined to find out more about it so I went searching on the web and came across the Phorfiia Clinic at Groote Schuur in Cape Town. On their web site, I found all the facts and information about the condition, also that it is curable through venisection. (In PCT you also have a iron overload) I printed the information and went back to the Dermatologist and was then referred to the Haematology Dept. Further blood tests revealed that I had Haemochromatosis (HH). Incidentally, PCT and HH are caused by the same mutated gene. Pretoria Academic is a training hospital The doctors have never really discussed the condition with me - they ask me how I feel and discuss my iron levels with me after doing blood tests and then decide when I must come for the next venisection. Fortunately, a sonar scan showed no organ damage at this stage and the only symptoms I have is weakness and fatigue.