This topic came to mind when reading what others were experiencing that live with a disease that at times can distract you. For me I have Marfan Syndrome a genetic disease that deals with the connective tissues in the body. Connective tissues play a detrimental role in the body.
Now back to the topic at hand but if you would like to learn more about Marfan Syndrome go to https://www.marfan.org the website is full of information. The topic made me think about my childhood I think back then as for professional support from doctors it was beyond great. All my doctors were in contact with each other about little ol’ me.(lol) It makes such a difference though. The care I received for the most part was excellent. It truly helped me to live a great childhood even having Marfan Syndrome. The doctors would always explain things to me. I would go to have my EKG and the tech would explain what was on the screen as my heart pumped which I have to admit was cool for me to see. As you get older become an adult for me things started to change.
As you get older you no longer can see your pediatrician doctor or your doctor happens to retire. Now I look for a doctor on my own and try to build patient-doctor relationship on my overall care in my adult years. I think more can be done in your different adult stages in life. Doctors that aren’t fully educated on your disease but quick to tell you “well you don’t fit the typical type”. You have to back up all the hard work that your doctors did in your childhood and give very-well respected doctors names that were apart of diagnosing you. I shouldn’t have to do that but it does happen. Another issue being told I don’t know what Marfan Syndrome is by a doctor. Really not what I want to hear but for educational purposes that’s the time to shed some light on your condition.
I’m not going to lie it’s been tough trying to build the patient-doctor relationship for my care in my adult years. I do think it’s highly important because for some not all you go through a lot of changes in your adult years. For example, I started experiencing a lot of pain (back, knees, etc.). My main question is how does my health issues relate to having Marfan Syndrome. Let me know what’s going on and whats possible to come or what I need to do too improve my quality of living. My childhood cardiologist always reminded me about what I could do and couldn’t do. It does make a big difference in your overall quality of living.
One very important part of your quality of living in your adult years is a great support system. I have a sister that has done lots of research on my condition who is quite knowledgable in the field. My parents who always encourage me and when I’m not feeling well I can confide in them. I have other family members that have given me encouraging words as well. It makes a big difference. I can talk about my condition and they can give me advice which does help.
My blog is about restoration and hope even though you might meet obstacles as you get older related to your health lean on your support system to help you. Yes my topic is “Wish I Would Of Knew” I would of loved a doctor to explain everything to me precisely about Marfan Syndrome in my adult years but that just hasn’t happened for me. I hope that changes one day for not just me but for others. Don’t get me wrong I don’t have a problem talking to doctors about any health issues I’m having that’s HIGHLY important. I take Marfan Syndrome “day by day” and yes “Wish I Would Of Knew” some things ahead of time to better of prepared myself and possibly fine tune some things to improve my quality of life before all the aches and pains. All I can do is continue to build a better patient-doctor relationship towards my care and find ways to improve my overall health. I can think “Wish I Would Of Knew” but now that I know some things it’s finding ways to take better care of myself. Maybe I didn’t know some things already in my adult years but I know enough to shed some light to help someone else struggling with their health condition.