Why is vitamin E being discussed in relation to MTS?

In recent years, research has shown that oxidative stress can play a significant role in various neurological diseases and disorders involving impaired mitochondrial function. Oxidative stress occurs when harmful oxygen compounds attack body cells, and these cells are no longer able to adequately protect themselves. Nerve cells are particularly sensitive to this. Vitamin E is one of the most potent natural antioxidants. It can help protect cells from oxidative stress and is therefore used by some physicians as a potential adjunct to treatment. This approach is also increasingly being discussed in the context of Mohr-Tranebjaerg syndrome (MTS) . While there is currently no cure and scientific understanding is evolving, there are indications that protecting nerve cells could be an important area of ​​research.

For this reason, some families, together with their doctors, opt for adjunctive therapy with vitamin E. In such cases, intake and dosage should always be medically supervised and regularly monitored through blood tests.

Our experiences as a family

We have been dealing with Mohr-Tranebjaerg syndrome in our own family for many years. Our oldest son is now 31 years old, and our younger son 12. Both have been receiving high-dose vitamin E for several years under medical supervision and with regular blood tests. Our observations give us hope:

• The condition of both our children has remained stable since the start of treatment.
• During the checkups, the vitamin E blood levels were always within the desired range.
• There was no evidence that the body could not utilize vitamin E.

For us, this is a positive sign. It indicates that the body is absorbing and utilizing the ingested vitamin E.

What does that mean?

Our experience is not scientific proof. However, it shows that long-term treatment with vitamin E under medical supervision can be well managed and, in our view, can be beneficial. We hope that future studies will investigate more closely what influence vitamin E might have on the course of Mohr-Tranebjaerg syndrome.

Important to know

Vitamin E is not a substitute for medical treatment and is not a cure for Mohr-Tranebjaerg syndrome. High-dose supplementation should always be done in consultation with a doctor . Regular blood tests help monitor treatment and detect potential side effects early.

Our advice to other families

If your child has been diagnosed with Mohr-Tranebjaerg syndrome, openly discuss the topic of vitamin E with your treatment team.

Not every doctor is familiar with this rare disease. A joint discussion about the current state of research and individual options can help in making a well-informed decision.