8

Which advice would you give to someone who has just been diagnosed with HFE hereditary haemochromatosis?

See some advice from people with experience in HFE hereditary haemochromatosis to people who have just been diagnosed with HFE hereditary haemochromatosis

HFE hereditary haemochromatosis advice

Advice for Someone Diagnosed with HFE Hereditary Haemochromatosis



If you have recently been diagnosed with HFE hereditary haemochromatosis, it is important to understand that this is a genetic disorder that affects the body's ability to regulate iron levels. While this diagnosis may feel overwhelming, there are steps you can take to manage the condition and live a healthy life. Here is some advice to help you navigate this journey:


1. Educate Yourself



Knowledge is power. Take the time to learn about HFE hereditary haemochromatosis, its causes, symptoms, and potential complications. Understanding the condition will empower you to make informed decisions about your health and treatment options. Consult reputable sources such as medical websites, books, or support groups to gather accurate information.


2. Establish a Healthcare Team



Building a strong healthcare team is crucial for managing HFE hereditary haemochromatosis effectively. Seek out medical professionals who specialize in genetic disorders or haemochromatosis. This may include a primary care physician, a hematologist, a genetic counselor, and a registered dietitian. Regularly communicate with your healthcare team, ask questions, and keep them updated on any changes in your condition.


3. Follow a Treatment Plan



Adhering to a treatment plan is essential for managing HFE hereditary haemochromatosis. Your healthcare team will likely recommend therapeutic phlebotomy, which involves regularly removing blood to reduce iron levels. This process is safe and helps prevent iron overload. Follow the recommended phlebotomy schedule and attend all appointments to maintain healthy iron levels.


4. Monitor Iron Levels Regularly



Regular monitoring of iron levels is crucial to ensure your treatment plan is effective. Your healthcare team will conduct blood tests to measure serum ferritin and transferrin saturation levels. These tests help determine the frequency of phlebotomy sessions and ensure your iron levels remain within a healthy range. Stay proactive and attend all scheduled monitoring appointments.


5. Maintain a Healthy Diet



Adopting a balanced and iron-conscious diet can significantly contribute to managing HFE hereditary haemochromatosis. Limit your intake of iron-rich foods such as red meat, organ meats, and iron-fortified products. Instead, focus on consuming a variety of fruits, vegetables, whole grains, and lean proteins. Consult with a registered dietitian who can provide personalized dietary recommendations based on your specific needs.


6. Stay Hydrated and Avoid Alcohol



Hydration is key when managing HFE hereditary haemochromatosis. Drinking an adequate amount of water helps support healthy blood volume and prevents complications. Additionally, it is crucial to avoid excessive alcohol consumption as it can worsen liver damage associated with iron overload. Make water your beverage of choice and limit alcohol intake to protect your overall health.


7. Communicate with Family Members



Since HFE hereditary haemochromatosis is a genetic disorder, it is important to communicate your diagnosis with your immediate family members. They may also be at risk of carrying the gene mutation and could benefit from genetic testing. Early detection and intervention can prevent complications in affected family members. Encourage them to consult with their healthcare providers and consider genetic testing if appropriate.


8. Seek Emotional Support



Living with a chronic condition can be emotionally challenging. It is essential to seek emotional support from friends, family, or support groups. Connecting with others who have HFE hereditary haemochromatosis can provide a sense of community and understanding. Consider joining local or online support groups to share experiences, gain insights, and find emotional support during your journey.


9. Stay Positive and Take Care of Yourself



Maintaining a positive mindset and taking care of your overall well-being is crucial when managing any chronic condition. Engage in activities that bring you joy, practice stress management techniques, and prioritize self-care. Remember that with proper management and support, individuals with HFE hereditary haemochromatosis can lead fulfilling lives.



Always consult your healthcare team for personalized advice and guidance based on your specific situation. They will provide you with the most accurate and up-to-date information regarding your diagnosis and treatment options. By taking proactive steps and staying informed, you can effectively manage HFE hereditary haemochromatosis and maintain your health and well-being.


Diseasemaps
11 answers
Treat the condition seriously but don't let it get you down.
A diagnosis of haemochromatosis is usually a very positive thing.
Begin treatment as recommended by your doctor.
Join your national support group, learn about your condition and work in partnership with your doctor to manage the condition for the rest of your life.
Investigate whether you can donate your blood as part of your treatment.
VIP - ensure all of your immediate family members (parents, brothers, sisters and adult children are tested at they may also be at risk.

Posted May 21, 2017 by Tony Moorhead 2051
Giving blood asap en check your iron/ferritin, together with some test of the lever if possible.

Posted Jun 3, 2017 by bewiki 4317
Join a support group of others with the same condition. They can help answer questions. Many doctors will tell you symotoms go away after treatment. This is not so. People like me know better. Talk to ones that have it

Posted Jul 22, 2017 by Tina 1501
I think the best advice I was given was "give yourself time to grieve." While this isn't the worst diagnosis in the world, it's something you are going to have to live with for the rest of your life. You'll have to learn how to manage it, understand how it impacts other aspects of your health, and encourage your family members to get tested to make sure they don't have it. It's a lot to take in, so give yourself time to process your new reality and grieve the changes that are headed in your direction so you can better cope moving forward.

Posted Jul 22, 2017 by alohaitsaj 1501
Look at websites such as ironitout.org, irondisorders.com and the Canadian Hemochromatosis Society websites for info and downloads about how to inform relatives. They need to know they have the gene mutation. Urge them to get tested, too. There are many Facebook support groups for HH, as well.

Posted Jul 22, 2017 by Salena 2001
First piece of advice....DONT PANIC! Don't bog yourself down with medical jargon and bombard yourself with web pages scaring the life out of you. You have been diagnosed which is Great, it's positive! You will now be treated and seen by an expert who will hopefully alleviate any fears you have. Ask simple questions such as "what are my ferretin levels" and what is the next step in my treatment. Join a support group online they can be great for finding things out from more experienced sufferers. And remember this is not a death sentence we can all live a perfectly normal healthy life with this condition.

Posted Jul 23, 2017 by Lorna 701
Eat less red mest and iron rich foods, dont take vitamin C.

Posted Jul 23, 2017 by Warbychick 1901
See the answers given further up.

In addition:

Please do not despair if you have to wait for a couple of months before your treatment starts. It is normal for high level of Ferritin that you do phlebotomy once per week during the first weeks/months. It is also normal with a short peak up on the Ferritin level after you have had some of the first phlebotomies. It is also normal that the Transferrin Saturation only drops below 45-50 % at he the very end of the series of phlebotomies and when the Serum Ferritin drops below 50. It also take some time before your extreme tiredness disappear.

Posted Jul 25, 2017 by Ketil Toska 2051
Read lots, talk to others about HFE and your own symptoms/signs, build a good relationship with your treating medical professionals

Posted Aug 2, 2017 by Natalie 2000
Give blood regularly. My first donation lowered my 1050 ferritin to 750. After 3 gallons of blood over the course of 3 years, my ferritin is below 50. I have severe joint damage and required a new hip joint. My liver is fine and mainly focusing on getting to healthy bone density levels. HH can breakdown the structural components of your joints and bones, making them fragile.

Posted Dec 23, 2023 by Richard 100

HFE hereditary haemochromatosis advice

HFE hereditary haemochromatosis life expectancy

What is the life expectancy of someone with HFE hereditary haemochromatosis...

12 answers
Celebrities with HFE hereditary haemochromatosis

Celebrities with HFE hereditary haemochromatosis

1 answer
Is HFE hereditary haemochromatosis hereditary?

Is HFE hereditary haemochromatosis hereditary?

10 answers
Is HFE hereditary haemochromatosis contagious?

Is HFE hereditary haemochromatosis contagious?

10 answers
Natural treatment of HFE hereditary haemochromatosis

Is there any natural treatment for HFE hereditary haemochromatosis?

9 answers
ICD9 and ICD10 codes of HFE hereditary haemochromatosis

ICD10 code of HFE hereditary haemochromatosis and ICD9 code

7 answers
Living with HFE hereditary haemochromatosis

Living with HFE hereditary haemochromatosis. How to live with HFE hereditar...

10 answers
HFE hereditary haemochromatosis diet

HFE hereditary haemochromatosis diet. Is there a diet which improves the qu...

12 answers

World map of HFE hereditary haemochromatosis

Find people with HFE hereditary haemochromatosis through the map. Connect with them and share experiences. Join the HFE hereditary haemochromatosis community.

Stories of HFE hereditary haemochromatosis

HFE HEREDITARY HAEMOCHROMATOSIS STORIES
HFE hereditary haemochromatosis stories
Discover as one of the first in Bergen, Norway. Both my brothers were caught because of me. Become the first blodd donor with Haemochromatosis on Haukeland sykehus. Have 1round 130 accepted blood donations and the double for sience.. Very happy to b...
HFE hereditary haemochromatosis stories
Until March 2016 I did not know I had haemochromotosis, but the signs and symptoms have been there for three years chronic fatigue, aching joints, lack of libido and at times crankier than normal being a working mum of two teenage girls and a wife of...
HFE hereditary haemochromatosis stories
I was feeling sick and went to my GP, who said I need some ferritin tablets and calsuim, well I got it and drank it , like my Gp told me, the following day I started icthing, then it sarted out with big red marks on my arms and all over my body, phon...
HFE hereditary haemochromatosis stories
I was diagnosed three years ago after both my parents tested positive for the HHC genes. My Dad is a C282Y carrier but my mum is Homozygous with 2 copies of the H63D gene, which was sadly diagnosed far too late. Both my sister and myself are Compound...
HFE hereditary haemochromatosis stories
I was feeling achy in joints and tired for few years before diagnosis,gene test not offered or mentioned when living ln England until when came to Ireland, GP ordered gene test after blood test and talk showed signs of haemachromotosis.I would recomm...

Tell your story and help others

Tell my story

HFE hereditary haemochromatosis forum

HFE HEREDITARY HAEMOCHROMATOSIS FORUM

Ask a question and get answers from other users.

Ask a question

Find your symptoms soulmates

From now on you can add your symptoms in diseasemaps and find your symptoms soulmates. Symptoms soulmates are people with similar symptoms to you.

Symptoms soulmates

Add your symptoms and discover your soulmates map

Soulmates map