Susanna van Tonder

Last updated
Susanna van Tonder
Susanna van Tonder.jpg
NationalityLuxembourger
EducationCombined Social Sciences (The Open University)
Known forDisability Rights Activism & Patient Advocacy
Term2019-present
Board member ofMultiple Sclérose Lëtzebuerg
Susanna van Tonder at the Brain, Mind and Pain Meeting at the European Parliament in November 2018. Susanna EP.jpg
Susanna van Tonder at the Brain, Mind and Pain Meeting at the European Parliament in November 2018.

Susanna van Tonder is a Luxembourg disability rights activist, patient advocate and blogger.

Contents

Van Tonder's first obvious symptoms of multiple sclerosis caused her to have a Grand Mal seizure in 2015. In 2016, exactly a year later, she was diagnosed with multiple sclerosis. [1] This experience of being diagnosed with an incurable disease in her early adult years led van Tonder to work on inclusion and wider understanding of the needs for people with disabilities and patients affected by chronic conditions.

After attending an event in 2017 organised by the European Multiple Sclerosis Platform (EMSP) and Shift.ms for Young People affected by Multiple Sclerosis she started being involved in the patient community. [2] In 2017, she joined Shift.ms' volunteer team called 'The Energy'. [3] In 2018, she became a member of the board of the non-profit association Multiple Sclérose Lëtzebuerg [4] and a member of the EMSP's Young People's network. [2] As the youngest board member of Multiple Sclérose Lëtzebuerg, youth engagement and reducing isolation are her main focus areas. [5]

In early 2019 she joined the Higher Council for People with Disabilities (CSPH) in Luxembourg to complete Tilly Metz term on behalf of Multiple Sclérose Lëtzebuerg and those affected by multiple sclerosis. [6]

In 2019, van Tonder created the M.S Brainy Campaign to "raise awareness of multiple sclerosis, and the diversity of those affected by MS. The campaign features the stories, and faces of those living with MS and what it may mean to live with MS. It operates under the hashtag #MoreThanBrain #MultipleSclerosis. [7] Van Tonder maintains a blog describing her journey as a patient advocate. [8]

Susanna van Tonder presenting group findings at MSIF World Conference Young People's Workshop Susanna presenting at MSIF Conference.jpg
Susanna van Tonder presenting group findings at MSIF World Conference Young People's Workshop

Recognition

For her work in the multiple sclerosis field, van Tonder won the youth award De Jugendpräis Wooltz 2019 in the category 'particular achievement'. [9]

Further reading

Related Research Articles

<span class="mw-page-title-main">Multiple sclerosis</span> Disease that damages the myelin sheaths around nerves

Multiple sclerosis (MS) is an autoimmune disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged. This damage disrupts the ability of parts of the nervous system to transmit signals, resulting in a range of signs and symptoms, including physical, mental, and sometimes psychiatric problems. Specific symptoms can include double vision, vision loss, eye pain, muscle weakness, and loss of sensation or coordination. MS takes several forms, with new symptoms either occurring in isolated attacks or building up over time. In the relapsing forms of MS, between attacks, symptoms may disappear completely, although some permanent neurological problems often remain, especially as the disease advances. In the progressive forms of MS, bodily function slowly deteriorates and disability worsens once symptoms manifest and will steadily continue to do so if the disease is left untreated.

<span class="mw-page-title-main">Flag of Luxembourg</span> National flag

The national flag of Luxembourg consists of three horizontal stripes, red, white and light blue, and can be in 1:2 or 3:5 ratio. It was first used between 1845 and 1848 and officially adopted in 1993. It is informally called in the country, «rout, wäiß, blo».

<span class="mw-page-title-main">Fingolimod</span> Chemical compound

Fingolimod, sold under the brand name Gilenya, is an immunomodulating medication, used for the treatment of multiple sclerosis. Fingolimod is a sphingosine-1-phosphate receptor modulator, which sequesters lymphocytes in lymph nodes, preventing them from contributing to an autoimmune reaction. It has been reported to reduce the rate of relapses in relapsing-remitting multiple sclerosis by approximately one-half over a two-year period.

<span class="mw-page-title-main">Pathophysiology of multiple sclerosis</span>

Multiple sclerosis is an inflammatory demyelinating disease of the CNS in which activated immune cells invade the central nervous system and cause inflammation, neurodegeneration, and tissue damage. The underlying cause is currently unknown. Current research in neuropathology, neuroimmunology, neurobiology, and neuroimaging, together with clinical neurology, provide support for the notion that MS is not a single disease but rather a spectrum.

<span class="mw-page-title-main">University of Luxembourg</span> Public university in Luxembourg

The University of Luxembourg is a public research university in Luxembourg.

<span class="mw-page-title-main">LGBT rights in Luxembourg</span>

Lesbian, gay, bisexual, and transgender (LGBT) people in Luxembourg have the same legal rights as non-LGBT people. Partnerships, which grant many of the benefits of marriage, have been recognised since 2004. In June 2014, the Luxembourgish Parliament passed a law enabling same-sex marriage and adoption rights, which took effect on 1 January 2015. Additionally, discrimination on the basis of sexual orientation and "change of sex" in employment, healthcare and the provision of goods and services is outlawed, and transgender people are allowed to change their legal gender on the basis of self-determination.

Multiple sclerosis (MS) is a chronic inflammatory demyelinating disease that affects the central nervous system (CNS). Several therapies for it exist, although there is no known cure.

<span class="mw-page-title-main">Glatiramer acetate</span> Medication

Glatiramer acetate, sold under the brand name Copaxone among others, is an immunomodulator medication used to treat multiple sclerosis. Glatiramer acetate is approved in the United States to reduce the frequency of relapses, but not for reducing the progression of disability. Observational studies, but not randomized controlled trials, suggest that it may reduce progression of disability. While a conclusive diagnosis of multiple sclerosis requires a history of two or more episodes of symptoms and signs, glatiramer acetate is approved to treat a first episode anticipating a diagnosis. It is also used to treat relapsing-remitting multiple sclerosis. It is administered by subcutaneous injection.

Inflammatory demyelinating diseases (IDDs), sometimes called Idiopathic (IIDDs) due to the unknown etiology of some of them, are a heterogenous group of demyelinating diseases - conditions that cause damage to myelin, the protective sheath of nerve fibers - that occur against the background of an acute or chronic inflammatory process. IDDs share characteristics with and are often grouped together under Multiple Sclerosis. They are sometimes considered different diseases from Multiple Sclerosis, but considered by others to form a spectrum differing only in terms of chronicity, severity, and clinical course.

<span class="mw-page-title-main">Marburg acute multiple sclerosis</span> Medical condition

Marburg acute multiple sclerosis, also known as Marburg multiple sclerosis or acute fulminant multiple sclerosis, is considered one of the multiple sclerosis borderline diseases, which is a collection of diseases classified by some as MS variants and by others as different diseases. Other diseases in this group are neuromyelitis optica (NMO), Balo concentric sclerosis, and Schilder's disease. The graver course is one form of malignant multiple sclerosis, with patients reaching a significant level of disability in less than five years from their first symptoms, often in a matter of months.

<span class="mw-page-title-main">Signs and symptoms of multiple sclerosis</span> Neurological signs and symptoms

Multiple sclerosis can cause a variety of symptoms: changes in sensation (hypoesthesia), muscle weakness, abnormal muscle spasms, or difficulty moving; difficulties with coordination and balance; problems in speech (dysarthria) or swallowing (dysphagia), visual problems, fatigue and acute or chronic pain syndromes, bladder and bowel difficulties, cognitive impairment, or emotional symptomatology. The main clinical measure in progression of the disability and severity of the symptoms is the Expanded Disability Status Scale or EDSS.

Malignant multiple sclerosis is used to describe MS patients who reach significant level of disability in a short period of time. Malignant MS cases are not common, less than 5% of patients with MS experience this type of progression.

Lorna Jean Moorhead is an American author, health columnist and health advocate. She is one of the first writers on the subject of women's health issues pertaining to multiple sclerosis.

Irma Resendez is an American advocate and author who founded the bilingual multiple sclerosis non-profit organization Familia Unida Living with MS in 1998. In 2005, Resendez served as a commissioner on disabilities for the city of Los Angeles. In 2014, Resendez wrote Simply Amor: A Mother's Miracle Living with MS, a collection of her personal experiences.

<span class="mw-page-title-main">Pathology of multiple sclerosis</span> Pathologic overview

Multiple sclerosis (MS) can be pathologically defined as the presence of distributed glial scars (scleroses) in the central nervous system that must show dissemination in time (DIT) and in space (DIS) to be considered MS lesions.

George Jelinek is an Australian doctor who is professor and founder, Neuroepidemiology Unit, Melbourne School of Population and Global Health. This unit expressly evaluates modifiable risk factors that predict the progression of Multiple sclerosis. He has served since 2017 as the Chief Editor for Neuroepidemiology in the journal Frontiers in Neurology, and he was Founding Editor – and is currently the Editor Emeritus – for Emergency Medicine Australasia. Jelinek also has the distinction of being the first Professor of Emergency Medicine in Australasia. Between 1987 and 2018, he published more than 150 peer-reviewed papers, seven book forewords and eight books, and received more than 20 research grants. He is a frequent invited speaker.

<span class="mw-page-title-main">Tilly Metz</span> Luxembourgish politician

Tilly Metz is a Luxemburgish politician of the Green Party. After teaching humanities and social sciences, she was appointed as deputy director of the Lycée Technique pour Professions Educatives et Sociales (LTPES) in Mersch. She was the mayor of the municipality of Weiler-la-Tour (Luxembourg) and has been a Member of the European Parliament since June 2018, as part of the Greens/EFA political group. She is particularly known for her stance on animal welfare, health-related issues and human rights.

Living Proof is a documentary directed by Matt Embry, released in 2017. The documentary explores Embry's story of living Multiple sclerosis (MS). Embry visits several MS patients and learns about their lifestyle changes and the progression of the autoimmune disease. Since there is no cure for multiple sclerosis, Embry and his father embark on journey to find answers and hope.

Anne Cross is an American neurologist and neuroimmunologist and the Section Head of Neuroimmunology at Washington University School of Medicine in St. Louis, Missouri. Cross holds the Manny and Rosalyn Rosenthal–Dr. John L. Trotter Endowed Chair in Neuroimmunology at WUSTL School of Medicine and co-directs the John L Trotter Multiple Sclerosis Clinic at Barnes-Jewish Hospital. Cross is a leader in the field of neuroimmunology and was the first to discover the role of B cells in the pathogenesis of multiple sclerosis in animals and then in humans. Cross now develops novel imaging techniques to observe inflammation and demyelination in the central nervous systems of MS patients for diagnosis and disease management.

<span class="mw-page-title-main">Roude Léiw</span> Flag

De Roude Léiw is the common name used for the civil ensign of Luxembourg. It can also refer more specifically to the heraldic animal of Luxembourg, which is often used as an emblem or mascot for various institutions and symbols related to Luxembourg.

References

  1. "Multiple Sklerose gëtt vu villen nach ëmmer net richteg verstanen, wat d'Liewe vun de Betraffene net méi liicht mécht". MOIEN.LU (in Luxembourgish). 2018-05-22. Retrieved 2019-12-11.
  2. 1 2 "YPN Series: Susanna's story from Luxembourg". EMSP | European Multiple Sclerosis Platform. 2 October 2018. Retrieved 2019-12-11.
  3. "Meet Our Volunteers". Shift.ms. Retrieved 2019-12-11.
  4. "MS Kontakt (p.9)" (PDF). Multiple Sclérose Lëtzebuerg. March 2018. Retrieved 12 December 2019.
  5. van Tonder, Susanna (March 1, 2019). "JUNGE MENSCHEN, MS UND LUXEMBURG - Eine Chance für einen relevanten gesellschaftlichen Wandel (p.12/13)" (PDF). Msweb.lu. Retrieved 11 December 2019.
  6. "Arrêté ministériel du 11 janvier 2019, concernant la nomination de nouveaux membres du CSPH. - Legilux". legilux.public.lu. Retrieved 2019-12-23.
  7. "M.S. Brainy - Multiple Sclerosis Campaign". www.facebook.com. Retrieved 2019-12-11.
  8. van Tonder, Susanna (23 November 2019). "And suddenly you are a...patient advocate!". Rosport.life. Retrieved 23 December 2019.
  9. "Jugendpräis 2019". Jugendpräis Wooltz 2019 (in German). 2019-03-04. Retrieved 2019-12-11.