Hemochromatosis
We’re all in this for good.
- help each other live better and uncover the best ways to manage your health today
- help researchers shorten the path to new treatments tomorrow
How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.
What is hemochromatosis?
Primary hemochromatosis is a genetic disorder that is characterized by excessive iron accumulation that results in damage to tissues. It can lead to liver disorders, diabetes, and heart disease. Secondary hemochromatosis may be related to excess iron intake, anemia, alcoholism, and other disorders.
Common symptoms reported by people with hemochromatosis
Common symptoms
How bad it is
What people are taking for it
Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people with hemochromatosis
Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)
Therapeutic Phlebotomy
Type
Procedures
How many have tried
8
Tried for
hemochromatosis
(8)
Data from patients with hemochromatosis, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with hemochromatosis
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)
Therapeutic Phlebotomy
Perceived effectiveness
for hemochromatosis (5 evaluations)
Total evaluations
5
Tried for
hemochromatosis
(8)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
fatigue
(2)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
anxious mood
(1)
depressed mood
(1)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain
(1)
Treatment name(s)
Biotin
Perceived effectiveness
for fatigue (5 evaluations)
Total evaluations
5
Tried for
fatigue
(1)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood
(1)
Perceived effectiveness
for pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain
(1)
Treatment name(s)
Cannabinol
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain
(1)
Perceived effectiveness
for pain (1 evaluation)
Side effects
constipation
decreased appetite
Total evaluations
1
Tried for
pain
(1)
Treatment name(s)
Cervical Epidural
Perceived effectiveness
for pain (1 evaluation)
Side effects
pain
Total evaluations
1
Tried for
pain
(1)
- Major
- Moderate
- Slight
- None
- Can't tell
- Severe
- Moderate
- Mild
- None
Data from patients with hemochromatosis, who reported starting treatments within the last 5 years.
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Who has hemochromatosis on PatientsLikeMe?
- 288 patients have this condition
- 4 new patients joined this month
- 166 say hemochromatosis is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 1 | |
| 20s | 6 | |
| 30s | 31 | |
| 40s | 58 | |
| 50s | 93 | |
| 60s | 58 | |
| 70+ | 26 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 6 | |
| 20-29 years | 9 | |
| 30-39 years | 29 | |
| 40-49 years | 29 | |
| 50-59 years | 14 | |
| 60-69 years | 1 | |
| 70+ years | 0 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 97 | |
| Female | 179 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 136 | |
| Not Diagnosed | 16 |
These charts show data from hemochromatosis patients who have completed their condition history
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