- Can you explain a little about the work that International Mito Patients does?
International Mito Patients (IMP) is a global network of 16 national patient advocacy groups on 3 continents. Each and every one of these organisations is active and powerful in its own country – IMP connects them together into one network.
Representing approximately 10,000 mitochondrial patients and their families across the world, IMP’s mission is to increase the quality of life for people with mitochondrial disease by facilitating cross-border cooperation and collaboration among national patient organisations.
Ultimately, improvement of quality of life and a cure for this devastating group of disorders is the goal of our organisation and this is why we strongly support the work of pharmaceutical companies such as Khondrion.
IMP aims include:
- To share best practices, information and knowledge, in order to:
– promote early diagnosis;
– develop appropriate care pathways;
– clinically manage disease;
- To be an international bridge between patients, clinicians, scientists, industry and policy-makers;
- To promote and advocate for speedy development of treatments and cures.
- How did you first hear of International Mito Patients and how did you get involved?
Years ago I lost my brother to mitochondrial disease, then it turned out that I myself was also affected, and years later my 15-year old daughter turned out to be affected too. I became really sad and angry and one question repeated itself in my head, “Why doesn’t the world know about this horrific disease?” Well, of course there are mitochondrial patients everywhere in the world, and clinicians and researchers knew, but somehow we were not connected.
So I transformed my sadness into the energy to fight for a stronger voice for the mitochondrial patient. With the idea of connecting and joining forces, I approached groups in our neighbouring countries and we founded IMP which has now just celebrated its 10th anniversary.
- How important do you think it is for networks, such as IMP, to exist for those affected by mitochondrial disease?
Networks such as IMP represent groups of patients who suffer from rare diseases. In individual countries, the number of patients affected by the disease is relatively small and it is hard to have influence. But if all these small groups connect and join forces, their voices become stronger and can be heard by all relevant stakeholders. Scientists, researchers, clinicians, industry and regulatory authorities all know where to find IMP when they need to learn about the patient’s perspective.
Additionally, when patients organise themselves at a global level, it is easier to be seen as a professional partner – IMP aims to be that partner for mitochondrial patients. I always say, “Doctors know everything about the disease, we know everything about the patient and the burden of the disease on everyday life.” That is why an organisation such as IMP can be a professional partner, and also a natural one.
- Has living with mitochondrial disease yourself influenced how you approached your role as IMP Chair? If so, how?
Yes, of course. I would not be the person that I am and have been able to fulfill the role of Chair of IMP as I have, if I were not suffering from mitochondrial disease. The disease has a negative impact on my daily life with respect to what I can do in one day, but at the same time it makes me strongly motivated and dedicated to our goals. I see that in all of the volunteers doing this work and, even without speaking, we understand the other person’s suffering. This work demands a high degree of empathy and for me that is the easy part.
My life motto is, “Even with very small steps you can get to the top.” This is how IMP has achieved so many things in the past 10 years.
- Why do you think it is important to raise awareness of mitochondrial diseases through campaigns like Rare Disease Day and Mitochondrial Disease Awareness Week?
Awareness is extremely important for patients and their families. It creates understanding and empathy, and consequently the acceptance of the disease. Not only with family members and friends, but also with the authorities. In the end, insurance companies and policy makers must be aware of the debilitating nature of these disorders in order to make the right decisions in regard to the support and care of patients. It is not exceptional that the diagnosis of mitochondrial disease is denied by the authorities, which means that the patient does not get access to proper care and support.
Let us also not forget how important awareness is for raising funds for further research. Fundraising activities are a great part of the events taking place in the Awareness Week in September, and rightly so!
- What are your hopes for the future for the mitochondrial disease community?
The ultimate dream, of course, is a cure or therapy for mitochondrial disease. However, mitochondrial disease exists as many different types, with a lot of variety in gene mutations and symptoms. Therefore, it is unlikely that one cure will solve it all. Cures will be developed, but maybe not for all types of mitochondrial disease. In any case, it will still take some time before they come to the market and are available for all patients in the world. Until then, I believe that we should strive for the best care for all patients worldwide. My hope for the future is that patients may count on either a cure or the best of care.
- What advice would you give to patients and families affected by mitochondrial disease?
I am a strong believer of the saying, “You are more than your disease.” Even if the disease is seriously affecting you, limiting what you can do, there are always qualities which you can focus on such as your personality. Coping with the disease is sometimes easier if you can share your experiences with others in the same situation and IMP offers some opportunities for this. If this is not right for you, it is always good to stay informed and gather as much information as you can so that you can cope through processing the information. The internet and social media, such as Facebook groups, are our friends in this process.