Mildred Lundgren: No Patient with HHT Should Face a Postcode Lottery for Life-Saving Care
Mildred Lundgren, Chairman of the Board at HHT Sweden, shared on LinkedIn about a recent article by Cecilia Ahlström Emanuelsson et al, published in JIM, adding:
“Rare diagnoses must not amount to a ‘postal code lottery’ where the stakes are human lives.
A landmark national registry study was recently published in the ‘Journal of Internal Medicine‘ (2026), led by researchers from Lund University and the Karolinska Institute.
For the first time, survival rates and causes of death for Swedish patients with the genetic vascular disorder HHT (also known as Morbus Osler or Osler’s disease) have been mapped.
The results reveal a painful inequality in the Swedish healthcare system:
- Shorter life expectancy: HHT patients in Sweden have, on average, a life expectancy that is 7.5 years shorter than that of the general population.
- High underdiagnosis: Only 9.3 per 100,000 Swedes have been diagnosed, meaning that more than 50% of those with the disease lack proper care and follow-up.
- Known complications: Patients die in large numbers from serious but potentially preventable complications, such as ischemic heart disease and liver diseases linked to vascular malformations.
Medical paradox and unequal care most notably, international studies from countries with centralized specialty centers (e.g., Denmark and the Netherlands) show that HHT patients there live just as long as the general population.
Systematic screening and early intervention eliminate excess mortality.
In Sweden today, we have skilled, multidisciplinary teams in Lund, Stockholm (Karolinska), Uppsala, and Gothenburg.
The expertise is there.
The problem is structural: If you don’t live in or near these regions, you’re often left out. Healthcare becomes a postcode lottery.
Fair and life-saving care should be determined by medical needs, not by your ZIP code.”
Title: Expected survival is decreased in hereditary hemorrhagic telangiectasia: Results from a population-based registry study
Authors: Cecilia Ahlström Emanuelsson, Anders Ehnhage, Mats Holmström, Oskar Hagberg, Marit Westman
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