Submissions: Join the Fight for Hereditary Hemochromatosis Awareness and Change

Population Screening | Consumer Advocacy | Action Campaigns | Policy Change

Did you or a loved one experience delayed diagnosis or misdiagnosis of hereditary hemochromatosis?
Did you undergo unnecessary surgeries or procedures?
Have you faced misinformation or dismissive treatment from healthcare providers due to their lack of education on HH?
Share how this disease impacted your life or your family’s and why earlier detection could have made a difference.

This Opportunity is a Q & A. Guidelines: Just Be Yourself, Write from your heart. Around 1,000 words

We need articles that dispute claims against population screening and highlight its importance:

Rarity and Equity: Show why population screening for HH, which affects 1 in 200 people, is just as essential as newborn screening. Highlight all the tests that are currently being done and not one of those tests have close to how many people have HH.
Undue Stress: Counter the idea that knowing you’re at risk without symptoms is harmful—emphasize how knowledge empowers prevention.
Rarity and Equity: Show why population screening for HH, which affects 1 in 200 people, is just as essential as newborn screening. Highlight all the tests that are currently being done and not one of those tests have close to how many people have HH.
Newborn Screening: Highlight how HH is far more common than most conditions on newborn panels and the long-term benefits of early detection.
In-Depth Disease Strains: Explore the devastating effects of untreated HH, including diabetes, liver disease, arthritis, heart failure, and more.
Maybe you have a better idea than screening the Population, we would love to hear it!

Write about how to improve training and awareness among healthcare professionals:

Target Audiences: Nurses, primary care physicians, gastroenterologists, hepatologists, oncologists, sports medicine specialists, and OB/GYNs.
Why It’s Needed: Many healthcare providers dismiss or overlook symptoms of HH due to lack of training. Advocate for better education on early detection and symptom management.
Focus on Specific Fields:
- OB/GYNs often serve as primary care providers for women—shouldn’t they be trained to recognize HH symptoms?
- Sports medicine specialists may misattribute joint injuries in male athletes to wear and tear instead of iron overload.

This directly targets the Clinical and Laboratory Standards Institute (CLSI), the sole decision-makers on lab testing guidelines:

Argue why ferritin and transferrin saturation should be included in routine CBCs.
Share personal stories about how a lack of iron testing delayed your diagnosis or worsened your condition.
Explain the systemic benefits of earlier detection—saving lives, preventing organ damage, and reducing healthcare costs.

We welcome articles about innovative solutions, accommodations, and awareness efforts:

Holistic Therapies and Alternative Treatments: Share what worked for you, whether it’s dietary changes, supplements, or less conventional approaches.
Raising Awareness: Write about ways to educate the public and policymakers about HH and its implications.
Workplace Flexibility: Advocate for accommodations for individuals managing chronic conditions like HH.
Disability Benefits: Explore the challenges and gaps in accessing disability support for those with severe HH-related complications.

Diet: Address misinformation and the lack of education about how diet can affect iron levels and overall health.
Exercise: Advocate for medical insurance to cover personal trainers, physical therapists, and exercise programs to support chronic condition management.

Write about the benefits of saunas, steam rooms, and hot tubs for those with iron overload or who cannot engage in traditional exercise.
Argue why insurance should cover memberships to gyms or spas offering these therapies.

Suggest innovations like combining phlebotomy with IV nutrient drips to improve patient outcomes.
Write about accessibility issues and propose solutions to make this life-saving treatment more widely available.

Advocate for incorporating these tests into standard care for earlier detection of toxic levels of iron, lead, and other metals.
Discuss how this could prevent complications and improve long-term health outcomes.

Word Count: 500 – 1,000 words depening on which articles you are submitting to.
Tone: Personal, persuasive, and data-driven.
Focus: Use personal anecdotes, evidence, or case studies to strengthen your argument.
Format: Write with clarity and ensure your article has a clear call to action.

This is your chance to advocate for change, raise awareness, and contribute to a growing movement to improve lives. Click here for guidelines and submit your article today. Let’s work together to drive meaningful change!