Who Is the Oldest Progeria Survivor?

Medically Reviewed on 2/7/2023

Illustration of a DNA strand
The oldest survivor of progeria, a rapid aging disease, is Tiffany Wedekind of Columbus, Ohio, who is 45 years old as of 2023.

Tiffany Wedekind of Columbus, Ohio, is 45 years old as of 2023, making her the oldest survivor of progeria, also known as rapid aging disease. It is believed that Wedekind's progeria differs slightly from that of others with the disease, which explains her surprising age.

The reason Tiffany Wedekind's progeria remained undiagnosed for so long was that she never had any health issues other than her teeth falling out. However, Wedekind has health problems and heart problems caused by progeria.

The artist lives a full life despite being physically confined to an elderly woman’s body because of her illness.

As a young woman standing only four feet five inches tall, Wedekind weighs just 58 pounds, making her look like a child.

Wedekind has cardiovascular disease, arthritis, and painful knee calcifications. Wedekind wears 3D-printed dentures after losing her roots to cancer, forcing her to switch to a liquid diet. Wedekind conceals her thinning hair with wigs.

Despite living her life the way she wants, Wedekind struggles with simple daily activities, such as chewing and walking barefoot.

However, Wedekind continues to live her life, grateful for every moment she has. In 2004, the creator launched her candle brand, which evolved into a yoga and art collective called Wanderlust Studio.

A list of the 9 oldest progeria survivors

  1. Chad Wedekind (1973 to 2012)
  2. Margaret Casey (1956 to May 26, 1985)
  3. Leon Botha (June 4, 1985 to June 5, 2011)
  4. Sammy Basso (December 1, 1995 to present)
  5. 5. Michiel Vandeweert (June 13, 1998 to present)
  6. Claudia Amaral (1999 to present)
  7. Mickey Hays (June 30, 1972 to June 30, 1992)
  8. Devin Scullion (August 1996 to January 23, 2017)
  9. Megan Nighbor (June 2000 to present)

What is progeria?

Progeria, also referred to as Hutchinson-Gilford syndrome, is a rare, progressive genetic condition that causes children to age rapidly during their first two years of life. The appearance of progeria in children at birth is generally normal. Signs and symptoms, such as slow growth and hair loss, begin to appear during the first year.

Strokes or heart problems are the most common causes of death in children with progeria. Approximately 13 years is the average lifespan of a child with progeria. The disease can cause death earlier or later in life for some individuals, whereas others may live longer, up to 20 years in some cases.

Although progeria cannot be cured, research suggests there is some promise for treating the disease.

What do progeria babies look like?

Hutchinson-Gilford progeria syndrome is a genetic disorder characterized by rapid and dramatic aging at a young age. The affected child looks normal at birth and early infancy but grows more slowly than other children and does not gain weight at the expected rate (failure to thrive). Their facial appearance includes prominent eyes, a beaked nose, thin lips, a small chin and protruding ears. It also causes hair loss (alopecia), skin with aged appearance, joint abnormalities and a loss of fat under the skin (subcutaneous fat loss). In this condition, there is no effect on intellectual development or motor skills such as walking, standing and sitting.

As early as childhood, people with Hutchinson-Gilford progeria syndrome develop severe hardening of the arteries (arteriosclerosis). Heart attacks and strokes are much more likely to occur at a young age due to this condition. Affected individuals may experience serious complications that can worsen and become life-threatening.

What are the symptoms of progeria?

The growth of a child with progeria slows significantly within the first year of life, but motor development and intelligence remain normal.

Symptoms of this progressive disorder include

  • Slowed growth, with below-average height and weight
  • Narrowed face, small lower jaw, thin lips and beaked nose
  • Head disproportionately large for the face
  • Prominent eyes and incomplete closure of the eyelids
  • Hair loss, including eyelashes and eyebrows
  • Thinning, spotty, wrinkled skin
  • Visible veins
  • High-pitched voice

These signs and symptoms also include progressive health issues, such as

  • Severe progressive cardiovascular (heart and blood vessel) disease
  • Hardening and tightening of the skin on the trunk and extremities (similar to scleroderma)
  • Delayed and abnormal tooth formation
  • Partial deafness (dysacusis, hypoacusis)
  • Loss of fat under the skin and loss of muscle mass
  • Skeletal abnormalities and fragile bones
  • Stiff joints
  • Hip dislocation
  • Insulin resistance

Typically, progeria is recognized at an early age, usually during regular checkups, when the symptoms of premature aging begin to appear in infants.

If you have any worries about your child's growth or development, or if you notice any progeria-related symptoms in your child, please consult your child’s doctor.

What causes progeria?

Progeria is a rare, progressive disease caused by a single genetic mutation. This condition involves the gene LMNA (lamin A), which produces a protein known as progerin, which is responsible for maintaining the structural integrity of the cell's nucleus. When a mutation occurs, the protein becomes defective, causing the nucleus to become unstable. Due to the instability of the cell structure, progeria is characterized by early and rapid aging.

What are the complications of progeria?

There are several possible complications, including

How is progeria diagnosed?

The condition is diagnosed based on signs and symptoms and a physical examination. Physical examinations include

Genetic testing can confirm LMNA gene mutations. Because progeria is a very rare medical condition, it is likely that the doctor may have no experience treating or diagnosing it. As a result, if progeria is detected in a child, it is imperative to speak with the doctor about a treatment plan.

How is progeria treated?

Currently, there is no cure for progeria. To detect cardiovascular disease at an early stage, it is necessary to monitor the heart regularly. Additionally, parents need to take their children for regular checkups, where the doctor plots a growth chart based on the child’s height and weight. In addition to checking the child's eyesight, hearing, and dental health, the doctors will examine the child's overall health.

There are several treatment options available to relieve some signs and symptoms of progeria, including

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What are future treatment options for progeria?

To treat progeria, more investigation or research is needed

  • On gene mutations to uncover the cause of this disease and develop new treatments.
  • To develop new methods of preventing atherosclerosis.
  • To further study the effects of drugs belonging to the group of farnesyltransferase inhibitors, such as lonafarnib, which can help gain weight and make blood vessels more flexible.
    • Zokinvy (lonafarnib) capsules have been approved by the FDA to decrease the risk of death from Hutchinson-Gilford progeria syndrome.

What are the necessary lifestyle changes for progeria?

The following considerations should be kept in mind while helping a child with progeria:

  • Keep the child hydrated as dehydration can lead to fatal complications. Make sure the child drinks enough water during the summer and when sick.
  • Provide the child with high-calorie foods and supplements.
  • Consuming small, frequent meals will increase the child’s calorie intake.
  • Make sure that the child maintains an active lifestyle following a doctor's consultation.
  • Have your child wear cushioned shoes or shoe inserts.
  • Make your child wear sunscreen with at least 15 SPF.
  • Make sure your child gets all vaccinations on time.

From WebMD Logo

Medically Reviewed on 2/7/2023
Image source: iStock Images

10 Oldest People with Progeria https://www.oldest.org/people/people-with-progeria/#:~:text=Tiffany%20Wedekind%20of%20Columbus%2C%20Ohio,others%20who%20have%20the%20disease.

Hutchinson-Gilford progeria syndrome https://medlineplus.gov/genetics/condition/hutchinson-gilford-progeria-syndrome/

Progeria https://www.mayoclinic.org/diseases-conditions/progeria/symptoms-causes/syc-20356038

Progeria https://www.webmd.com/children/progeria