I aim to expose gaps in care, enable practical support and drive medical and organisational change. For people with multisystem diseases – especially those too ill to organise help themselves.
Author and contact person: Heike Sachtleben
Discover my purpose ↓
I want to show where care fails, why it happens and what needs to change. Existing medical and therapeutic options should reach people who need them. New approaches need research and a path into practice.
My own experiences are a starting point for this project. I want to use my story and medical knowledge to make wider issues tangible and help protect others from similar experiences. My focus is on people who need support and the changes that could help them.
These are the goals I want to work towards. Content and practical services will be developed step by step.
I advocate early medical care and prevention, including knowledge in primary care, standardised questionnaires, clear guidance and access to specialists. Pacing, appropriate sick leave, symptom management and protection from overexertion deserve particular attention.
Primary care, emergency services, hospitals, nursing, health insurers, medical assessments and rehabilitation must respond to people’s needs. I want to highlight overload, stigma and premature psychosomatic attribution, and promote appropriate care.
I want to encourage trained volunteers, home-based medical care and coordinated everyday assistance. People with very severe illness need accessible points of contact. Organising help must not fall solely on relatives.
My goal is interdisciplinary care across immunology, neurology, vascular medicine, gastroenterology, allergology, metabolic medicine and other specialties. Biochemical and pathophysiological mechanisms should be investigated and translated into therapeutic approaches.
I want to identify barriers to existing treatment options, including care for pain, dysautonomia, MCAS, gastrointestinal dysfunction, deficiencies and other coexisting conditions. Research findings should inform practical care.
People who have been unable to leave their home or bed for years need a voice and a meaningful prospect of care. I want to reach those who no longer have the energy to ask for help themselves.
Planned formats include short videos, documentaries, articles, voice messages, personal accounts, conversations, expert interviews and concrete examples from everyday care.
Planned documentaries will explore experiences of illness, care and medical developments.
People affected, clinicians and researchers will share their experiences and perspectives.
Accessible explainers will explore medical mechanisms, research and questions of care.
Future online discussions will focus on research, care and therapeutic approaches.
Planned articles, commentary and research overviews will explore multisystem diseases and their impact on society.
This is about responsibility, practical help, medical care and a change in public understanding. So that missing or inappropriate care no longer leaves people behind.
If you would like to support me, you can find my fundraising campaign here.
Go to Heike’s GoFundMe campaign ↗