I want to say hello today, and offer support. I did look up porphyria. I am so sorry your daughter has this condition. Never loose hope that there can be help for it. Lean on those that love you, and know that this site will support you through all of it. Many compassiate souls here. Try that physiatrist. They just do things from a different perspective and may be able to help. Keep in touch. You will be in my thoughts and prayers. ginnie