What is ROHHAD
Marisa
Hi, my name is Marisa. In June of 2010 at the age of 4 years old I was diagnosed with ROHHAD. ROHHAD stands for Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation.
ROHHAD is an extremely rare disease and is drastically underfunded. There is no treatment or cure for ROHHAD and the source of this disease has not yet been determined. Symptoms of ROHHAD vary for each child and are usually misdiagnosed.
They generally start with rapid onset obesity in the first 2-4 years of life then leads to impairment of the nervous system and inevitably reduced lung function leaving most ROHHAD patients unable to breathe without the assistance of a ventilator.
So, What is ROHHAD?
ROHHAD
Rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation. Currently, there is no treatment or cure for ROHHAD and the source of this disease has not yet been determined. Symptoms of ROHHAD vary for each child and are usually misdiagnosed. They generally begin with rapid onset obesity in the first 2-4 years of life, followed by impairment of the nervous system and inevitably reduced lung function leaving most ROHHAD patients unable to breathe without the use of a ventilator.
Research Lurie's Children's Hospital in Chicago
Often misdiagnosed
Rapid onset obesity the first 2-4 years of life
No treatment or cure for this rare disease
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Rapid-onset obesity
Large weight gain in a short amount of time
(15 to 20 lbs. in a 6- to a 12-month period with onset between 1.5 and 10 years of age.)
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Hypothalamic dysfunction
- Increased weight gain in a short amount of time
- Hypothyroidism –Causing fatigue, weight gain, hair and skin changes, cold intolerance
- Growth hormone insufficiency
- Diabetes insipidus or innapropriate anti-diuretic hormone
Excessive or diminished thirst due to water/salt imbalance - Hypoventilation – Breathing that is not adequate to meet the needs of the body, or reduced lung function
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Autonomic dysregulation
Impairment of the autonomic nervous system
Some symptoms include:
- Altered sweating
- Decreased body temperature
- Decreased sensitivity to pain
- Cold extremities – hands and feet
- Bradycardia – decrease in heart rate
- Chronic diarrhea or constipation
Fight for a Cure
ROHHAD FIGHT INC. is a Not-For-Profit Organization that has been created to raise awareness and funding to help children and families who suffer from ROHHAD. Our goal is to raise enough funding to contribute to research and to help families dealing with ROHHAD with travel expenses and unreimbursed medical costs to ease the financial burden of this very rare disease. Since there are so few cases and a limited number of doctors who have heard of it, children suffering from ROHHAD often have to travel to other parts of the country for proper medical attention.
OUR STATS
158
Documented cases worldwide
6
Months rapid weight gain (20 to 30lb)
40
Percent develop neuroendocrine tumors
50
Percent require ventilators
SPREADING AWARENESS
Unfortunately very little research has been done due to the lack of awareness and lack of funding as most people have never even heard of ROHHAD. Lurie's Children's Hospital in Chicago is currently in the process of doing research in the hopes of finding information to help diagnose, treat, and cure this disease.
Please help us, so we can help the children suffering from this horrible disease by sending a tax-deductible contribution in any amount to ROHHAD FIGHT INC. at 3 Surrey Lane, Hempstead NY 11550.
ROHHAD FIGHT INC.
ROHHAD FIGHT Inc. is a 501c3 nonprofit organization. Our mission is to expand knowledge of the rare syndrome called ROHHAD, advance treatment, discover a cure, enhance the quality of life of the ROHHAD children and ease the financial burden of families who have children suffering from ROHHAD.
