Join usDonate

Questions about HCHWA-DContact us via

A stroke, now what?

I had a stroke

We are so sorry for you. It depends on the symptoms whether patients choose to go to hospital. Especially the first stroke can be very frightening and for some it is the first time they hear of Dutchtype CAA. When you have questions about healthcare that your neurologist can not answer, the Leiden University Medical Center has a specialised clinic that your doctor can contact, details on this page. Hospitalisation is not always necessary, but it is good to contact emergency services if you are worried. 

If you have any questions, please do not hesitate to contact our CareCenter. We are happy to help you and answer your questions, and if we can't, we will find somebody who can.

Rehabilitation after a stroke

We would like to inform you of your options, although we realise that it might be hard to get proper care outside of the Netherlands, because of a lack of knowledge of health care providers. For patients with Dutchtype CAA, there are two rehabilitation options after a haemorrhage. 

Inpatient rehabilitation
Sometimes recovering at home is not possible and inpatient care is needed. Outside of the Netherlands there are no specialised wards for patients with Dutchtype CAA. There are neurologist, physiotherapists, etc. who are specialized in stroke who can help you.

Outpatient rehabilitation
You visit the rehabilitation centre for treatment. The rest of the time you are at home.
Inpatient rehabilitation after a stroke is useful if you have problems with:

  1. Mobility: walking indoors or outdoors, climbing stairs, getting in and out of bed and transportation over long distances.
  2. Self-care: washing, dressing, eating, urinating and defecating.
  3. Communication: reading, writing and talking.
  4. Daily activities: housekeeping, cooking, job and hobbies.

It is probably best to ask your GP or neurologist abouw how to organise care. In some countries it is possible to get a casemanager. They can help you navigate healthcare and are also there to support caregivers.