What is your name? Jeannine Keith
Type of Porphyria? Hereditary Coproporphyria (HCP)
When & how long before you were diagnosed? I started having symptoms in March of 2010 and got my formal diagnosis June of 2010. In May of 2010 my Gastroenterology Dr. Peter Heit sent me for a urinalysis of the porphyrin levels in my body after I had every other organ tested with no answers to my pain. When the urinalysis can back positive he found me my savior Dr. Bari.
Who was able to diagnose you? Name/place? Dr. Fazal Bari, Oncology and Hematology Specialists
What has been your experience with porphyria? It is an unknowing disorder and can sneak up on you at any time day or night. I have had more good days than bad thankfully.
What symptoms do you have and how long do they last for? I have dealt with pain in my side, back, and chest. I have also had experienced nausea, neuropathy, and suffer from anxiety.
What treatment do you get? How often do you have to get treatment? Since 2010 I have been doing IV therapy of D5W monthly. When I started this, I was going to my doctor’s office 3 days out of the month during my menstrual cycle and spent 4 hours getting my hydration in the office. After doing this for a few months and knowing that this type of treatment was working for me I got a PICC line. I had that for 6 weeks and was able to have a nurse come to my house and I could run my IVs from home. After I had the PICC line taken out, I had my first port in 2011. I had my port in for 2 years before opting to have it moved from its original position. I have had my second port since November 2012 and still do my IV therapy from home, work or wherever I am.
Do you think a new medication would help you? What I am doing has been helping me for the past 8 years. I am not sure if new medication would help me.
How does having porphyria affect your daily activities? It really doesn’t affect my daily activities unless I am having an attack. I live my life the way any person would, and I make sure I stay hydrated and attack free as best I can.
How has porphyria affected your life & family living? It is my way of living and I try not to let it affect my life or family living. I have this disorder, but I am not this disorder.
What are the positives of knowing you have a rare disorder? The positives are that when I have pain, nausea, vomiting or an anxiety attack I know what could most likely be the cause. I can also educate others about porphyria.
How do you keep yourself encouraged from day to day? I think about all the positives in my life and know that I am blessed. My 4-year-old son Ayden and my husband Sean are also my loves, my support and my heart.
If you could give an advice to another one suffering what would you say? Don’t let this disorder define who you are. You are strong and can fight this. I know having this disorder is terrible and we all have our good days and our bad days, but we have to keep our heads held high and smile because some days that is all that might get us through. Remember, you never know what someone is going through, and I like many, smile and say everything is ok but sometimes it is ok to be truthful and say when it is not ok.
How has the APF been there to assist you? (Materials, videos, calls, FB) There website has many articles, blogs and useful information. I have met so many people through groups on FB and they are wonderful!
What else would you like to mention? I am very lucky to have an amazing support system of Family, friends and medical professionals. I want to thank my husband Sean for always being by my side, my son Ayden for always making me laugh & My parents for always being there for me through learning about this disorder and getting answers. I also want to give a huge thank you to Dr. Bari for giving me my life back because without you I don’t know where I would be with this disorder.
Thank you Jeannine Keith for sharing your inspiring journey with HCP! You always encourage us.