- Hereditary Angioedema
- Interviews
Natalie's interview
How did all start?
Swelling in my lips, face, nose, chin, throat, tongue... daughter also has severe swelling of hands, fingers and sometimes her feet years before I started having issues
Do you already have a diagnosis? How long did it take you to get it?
No. I am very frustrated. My PCP send me for blood test after blood test and never follows up with me. I now have another appoinment with an allergist on 2/24. My pcp keeps saying it has to be an allergy and there has to be a trigger... i ha e keep a food diary for 2 months, enviromental diary for two months, and have not ben stung or biten by anything. The episodes come and Go nat random at all times of the day and not always in one spot and it seems to get worse every time.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Been treated for allergies, tons of different allergy medicines, prednisone, stomach medicines... none of which have worked. Also have an epipen
What has been the most useful thing for you so far?
None
What have been your biggest difficulties?
No real diagnosis and being bounced around by a PCP that doesn't seem to listen... half the time she forgets my major allergies that are documented and chronically says oh that's right I will put it in the system
How has your social and family environment reacted? Have your social or family relationships changed?
My husband doesnt understand my frustration and seems to be upset with me... people come into my work and say oh my God what is wrong with your face.. literally just want to station my house and nearly panic anytime u feel it coming on
What things have you stopped doing?
Quit drinking coca-cola a few months ago
What do you think about the future?
Not sure
