Living with Cold-induced sweating syndrome
A genetic condition that affects body temperature control, with feeding and muscle problems in infancy and heavy sweating in childhood.
Understanding Cold-induced sweating syndrome
In infancy it is often called Crisponi syndrome, and researchers now believe both names describe the same condition at different ages. Infants may have weak facial muscles, feeding and breathing problems, and unexplained high fevers. In the first decade of life, people begin to have episodes of heavy sweating and shivering, usually triggered by cool temperatures.
Signs & symptoms
Symptoms vary from person to person. GARD describes these features:
- Severe feeding difficulties in infancy
- Weak muscles in the lower face and drooling
- Unexplained high fevers starting in infancy
- Tightly fisted hands and overlapping fingers
- Episodes of heavy sweating and shivering
- Trouble fully straightening the elbows
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The Foundation for Peripheral Neuropathy may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: The Foundation for Peripheral Neuropathy
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with The Foundation for Peripheral Neuropathy and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in genes cause this condition. It is autosomal recessive, so a child inherits a changed copy of the gene from each parent.
Also known as: ciliary neurotrophic factor receptor-related disorder; ciss; crisponi syndrome; sohar-crisponi syndrome
Patient organizations
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Cold-induced sweating syndrome.
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