What is ROHHAD?

Rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation (ROHHAD)

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. The research being done at Lurie's Children's Hospital in Chicago by Debra Weese-Mayer, is being done to combat this disease, but is hampered due to a lack of awareness and funding. (CLICK HERE FOR SOURCE)

 

Marisa 2010 Marisa Today

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 lead to impairment of the nervous system and inevitably reduced lung function leaving most ROHHAD patients unable to breathe without the assistance of a ventilator. 

 

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.

 

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.

 

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. Contributions can also be made via paypal using the links on this website or via our email address - This email address is being protected from spambots. You need JavaScript enabled to view it..

 

Explaining ROHHAD

Rapid-onset obesity – Large weight gain in a short amount of time 

(15 to 20 lbs in a 6- to 12-month period with onset between 1.5 and 10 years of age.)

Hypothalamic dysfunction – When the hypothalamus does not function properly.  Some symptoms include:

  1. Increased weight gain in short amount of time
  2. Hypothyroidism –Causing fatigue, weight gain, hair and skin changes, cold intolerance
  3. Growth hormone insufficiency
  4. Diabetes insipidus or innapropriate anti-diuretic hormone
  5. 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

Autonomic dysregulation – Impairment of the autonomic nervous system 

Some symptoms include:

  1. Altered sweating
  2. Decreased body temperature
  3. Decreased sensitivity to pain
  4. Cold extremities – hands and feet
  5. Bradycardia – decrease in heart rate
  6. Chronic diarrhea or constipation