feeling trapped by the ticking time bomb quality of life with my lupus family tree

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Patients Chancroid

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Member Carenity
Posted on

As of yet I have yet to be diagnosed with lupus. I clicked the interested button because there was nothing else that fit my situation better. concerned and stressed out would be a better fit.

both my mom and my sister have severe cases lupus (my sister having another one as well that i can never remember the name of) and there is a history of familial deaths due to it.

my sister's diagnosis was a few years ago, and my mom's about a month or two ago.

my sister has had her kidneys almost shut completely down before and one of our ancestors died because it attacked his brain.

i am too afraid to get test ed because of what might come up and don't want to ask the family's doctor. I'm afraid of the statistics and rarely sleep at night because of all the stress.

i am unsure what to do. I trust my family an my doctor but have never been comfortable with opening up to people about what i'm going through.

i don't know what to do or who to go to.  i need support and guidance.

Beginning of the discussion - 4/8/19

feeling trapped by the ticking time bomb quality of life with my lupus family tree
Member Carenity
Posted on

@Hidden username I would recommend talking to your primary care practitioner, but for a true diagnosis and opinioin, I highly recommend to see a rheumatologist. What about the doctor your family sees for lupus?

Are you having any symptoms now? I understand your fear, but since it seems to be in your family, it may be best to discuss it with a specialist because he or she will be more knowledgeable than your primacy care physician and will be able to guide you based on his clinical expertise. 

Even though there is no gene that science has linked to lupus diagnosis, it does seem to somehow run in the family so I beleive there is likely a link. Play it safe in my opinion.

feeling trapped by the ticking time bomb quality of life with my lupus family tree
Member Carenity • Community manager
Posted on

@Hidden username Thank you for sharing and to @Hidden username for advice from someone who has been diagnosed with lupus and can relate. I am sure other members will also to chime in with their opinion and advice; however, I wanted to also bring your attention to some discussion that have been created that you may find helpful. Feel free to also comment on those with any relatable question/concerns to the topic it addresses.

https://member.carenity.us/forum/living-with-infection-inflammation-immune-syst/lupus-464

https://member.carenity.us/forum/living-with-infection-inflammation-immune-syst/took-18-years-to-receive-a-diagnosis-480

 

feeling trapped by the ticking time bomb quality of life with my lupus family tree
Member Carenity
Posted on

I am at a frustrated phase feeling trapped and depressed. I cannot do my house work and laundry like I use to. I am tired all the time, mad and nothing of importance will tick me off