You should consult a doctor as soon as you notice any frequent infections, increased or hard-to-stop bleeding (e.g. long-lasting or frequent nose bleeds), increased bruises, fatigue or a feeling of sickness, fever, night sweats, or paleness. You should also see a doctor right away if you suffer from increased skin pigmentation, vomiting, weight loss, other gastrointestinal complaints, or clouding of consciousness. If you develop new symptoms or complaints, they should likewise be evaluated as soon as possible.
Unfortunately, we are as yet unaware of any existing support groups for patients with SAMD9 deficiency. We will add new information as it becomes available.