For the eye:
- Bolus of Steroids can calm the inflammation and reduce the optic nerve oedema. Unfortunately, it is not enough and steroids have negative effects on the body when they are taken for a long time.
- Specific anti cytokines treatments can be an alternative. It seems that Tocilizumab (Roactemra, anti IL-6) or Adalimumab (Humira, Anti TNF-alpha) are the best one for the eye but we are not sure and it only slightly reduced the inflammation.
- IVIg treatment has been tested also and has shown some promise.
- Finally, Drugfarm is working on an ALPK1 inhibitor.

For the systemic part:
Specific anti cytokines treatments like Anakinra (Kineret, anti IL-1), Adalimumab (Humira, Anti TNF-alpha) or Tocilizumab seem to be very promising to reduce headaches and other symptoms like joint pain.

If you have 2 or more symptoms, it will be beneficial to talk with your physician about ROSAH.
Considering that, other ROSAH symptoms may be unveiled.
For example, many ROSAH patients have discovered that they have also an Optic nerve oedema. Only specific eye doctors can detect it.
It may be beneficial to be tested genetically, We can help you to do it.

Yes definitively, because we can have several ectodermal malformations like: hair, teeth, nails, sweat glands, salivary glands.
You will find more information on the NFED Home page.
Because of our bad teeth, it is very important to take very good care and see often a good dentist.
For the sweat incapacity, you can wear a cooling vest during hot days and learn your body limits to avoid overheating it.

At any age. Eye issues can start as early as 5 years old.

Without knowing of ROSAH, most of physicians used to decide to remove our enlarged Spleen. The size of the Spleen can fluctuate with the time (most of all when you met virus like EBV). Some patients have had a decrease of symptoms after removing it. This is something that needs to be discussed with your physician.
We always need to be on top of our vaccinations.