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Dmkmom04
@dmkmom04

Posts: 7
Joined: Jul 13, 2016

Multiple family members with autoimmune diseases....is there a link?

Posted by @dmkmom04, Jul 13, 2016

i am 48 yr old who tested + for HLAB-27 and Lupus at my family physician in 2012 after my son 2011(18 yr now) dx AS and daughter (23) dx same ur psoriatic arthritis. My father 70 just passed awayJune dx Lupus, end stage lung disease, brother(50 ) with primary progressive MS and his Daughter (23) dx RA . Anyone see this many autoimmune in 1 family? Know any clinical trials?
I read correlation between lupus /MS and AS/ MS. Anyone else know any info would be helpful.

REPLY

@dmkmom04 Welcome to Mayo Connect and thanks for sharing this very involved family history of autoimmune disorders. I anticipate that you will get some responses from others with autoimmune disorders. Have you checked the NIH website? They have a lot of clinical trials listed there, You might find something that resembles what you are looking for. Best wishes to you and all of your family. Teresa

Liked by Dmkmom04

Hi @dmkmom04, and I want to echo @hopeful33250‘s welcome! I’d also encourage you to check out https://clinicaltrials.gov/ to learn more about clinic opportunities. I’m also tagging @salena54, @johnwburns and @aimeenc who have all talked about lupus and/or autoimmune diseases.

Here is some additional information on Lupus from Mayo Clinic: http://mayocl.in/1o2QJkY. Have you consulted with your physician about this?

Liked by Dmkmom04

@alysebrunella

Hi @dmkmom04, and I want to echo @hopeful33250‘s welcome! I’d also encourage you to check out https://clinicaltrials.gov/ to learn more about clinic opportunities. I’m also tagging @salena54, @johnwburns and @aimeenc who have all talked about lupus and/or autoimmune diseases.

Here is some additional information on Lupus from Mayo Clinic: http://mayocl.in/1o2QJkY. Have you consulted with your physician about this?

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Yes, I am an RN and have known I had some auto immune symptoms and my Rheumatologist 3 yrs ago said inconclusive back then. The last 1 1/2 yrs had short term memory loss and had MRI confirm brain atrophy and right frontal lobe atrophy….neurologist had no explanation. I did research and saw correlation between brain atrophy and Lupus. I guess tomorrow will have labs back. Should shed light on some things. This is the worst I have ever felt.
Thank you for your feedback and e info …. I will check out clinical trials. God bless you!

@alysebrunella

Hi @dmkmom04, and I want to echo @hopeful33250‘s welcome! I’d also encourage you to check out https://clinicaltrials.gov/ to learn more about clinic opportunities. I’m also tagging @salena54, @johnwburns and @aimeenc who have all talked about lupus and/or autoimmune diseases.

Here is some additional information on Lupus from Mayo Clinic: http://mayocl.in/1o2QJkY. Have you consulted with your physician about this?

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Thank you, Alyse. My name is Denise btw.
I work as RN case manager but have not yet come across many families with the extensive family autoimmune history as mine.
I appreciate any feedback I can get.

Hi Denise, let me add my welcome as well. Autoimmune diseases apparently do cluster in families but its likely to be unknown as to why at this point. Here’s a brief reference to it: http://www.ncbi.nlm.nih.gov/pubmed/23497011
Another aspect of autoimmunity is that its not understood where one disease leaves off and another starts. For example, Sjogren’s can manifest as an central nervous system disease which closely mimics MS. I only know this because I have Sjogren’s and carry HLA-B27 as well, with plenty of Sjogren’s related problems but no apparent HLA-B27 related disease. So, a sufferer may think that they have multiple illness and just have multiple manifestations of the same one. There are a lot of correlations, such as other HLA associations, that some doctors are aware of but I suspect that they don’t want to expose patients to extensive testing that won’t really boilerplate a diagnosis or change the treatment (e.g. HLA-DR). There are also other factors beyond genetic and other markers which may influence a tendency toward autoimmunity, such as stress and disrupted sleep. If you are worried about Lupus have you gotten tested for the basic stuff like ANA, anti-ds DNA and anti Smith antibodies? They usually start with a set of basic tests and if they hit any positives they build on it. Be patient, it can take a while to find out what’s going on. I’m sure this is old news to you as an RN. It took about 20 years for several of the elements of my autoimmune problems to show a common source. Also remember that the nervous system is more plastic than they had previously thought so try and stay optimistic. Easy to say I know. Kind of rambling but hope it helps.

Hi Denise, I can only add a little about autoimmune diseases in families. My grandpa (mom’s dad), my mom, myself, and a niece (mom’s sister’s child) all have autoimmune conditions. So far nothing is showing in my children. I’ve always been told that there is genetic tendency. I’m talking vitiligo, psoriatic arthritis, eczema, and primary sclerosing cholangitis (which is thought to be autoimmune driven). That’s all I know.

@rosemarya

Hi Denise, I can only add a little about autoimmune diseases in families. My grandpa (mom’s dad), my mom, myself, and a niece (mom’s sister’s child) all have autoimmune conditions. So far nothing is showing in my children. I’ve always been told that there is genetic tendency. I’m talking vitiligo, psoriatic arthritis, eczema, and primary sclerosing cholangitis (which is thought to be autoimmune driven). That’s all I know.

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We are a family with (at least) three generations of documented food allergies/sensitivities/intolerances, including anaphylaxis, with neurological manifestations, as well as environmental triggers for hay fever and asthma. And some other neurological and other diagnoses of inherited anomalies that have shortened lives, or reduced the quality of life in end stages. Much of this information will never be known, and lost to our family history, given medical privacy.

With respect to immune deficiencies, we like to think of ourselves as not being “disordered”, but having a highly sensitive immune system. Yes, it could kill us, but we know what to do; we are just at the tail end of a genetic curve, maybe one with lots of modes — but I like to think positively.

Perhaps one day these immune system differences (not disorders) will be more fully understood from a genetic standpoint. Until more progress is made, our immune challenged family supports research and advocacy, and chooses to live in urbanized areas with model law for emergency responders, who are provided great training, and who transport us to great hospitals with outstanding emergency and other health services. Travel outside of these areas is always a challenge, but is becoming easier. We always buy travel insurance, and register at hospitals away from home in advance of need. Families like ours develop our support networks, both medical and non-medical, and, if we can, we tend to stay in one place for a long time. We are concerned for those families with dependents who must rely upon multiple providers over the course of growing up, or growing old, and the sacrifices made by the family members who provide the primary source of income in order to make access to health care a priority.

As my family enters into a new developmental stage, supporting our children as they raise their own children, presumably with some as yet unidentified immune deficiency, I am reminded that challenges are provided to those who can meet them with the help of the medical community, as well as friends and families, and others who experience similar life challenges. For example, a neighbor child was born blind, and has become a model student in an accelerated program, perhaps inspiring its peers to study blindness. At the same time, the parent of this child rose to the challenge, and applied an advanced non-medical degree as a board member of a national advocacy organization, a role for which he did not know he had been prepared, until asked to meet this life challenge.

In sum, we are all in this together, whether or not we inherit these genetic differences in our own families. Thinking positively, those of us who know our biological heirs are more fortunate than those families that are formed by individuals who are not biologically related, including children who no longer have, or may never have had, access to their genetic history.

Liked by Bonnie

My family on my maternal side shows a significant prevalence of autoimmune-related diseases, including Crohn’s, Celiac, Raynaud’s, vitiligo, and primary sclerosing cholangitis. Not clear why some family members were skipped and others not, but the family connection is unmistakable, in my opinion.

@rpswanson1

My family on my maternal side shows a significant prevalence of autoimmune-related diseases, including Crohn’s, Celiac, Raynaud’s, vitiligo, and primary sclerosing cholangitis. Not clear why some family members were skipped and others not, but the family connection is unmistakable, in my opinion.

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Thank you so much for response. I will continue to look at responses and push forward I research so to grasp greater understanding.

Welcome to Connect @rpswanson1. Do you have an autoimmune-related condition yourself?

Mi abuela falleció de lupus, mi mamá presenta artritis y mi hija de 2 años ha sido diagnosticada con neutropenia autoinmune sumado a alergia alimentaria. Estos pueden ser sugestivos de condiciones autoinmunes hereditarios?

Hola @guadalupe1087. ¡Bienvenida a Connect! Es muy difícil cuando hay historia familiar de este tipo de enfermedades autoinmunes, especialmente si su hija tan pequeña ha recibido un diagnóstico de neutropenia autoinmune sumado a alergia alimentaria. Aquí le sugiero un enlace donde puede obtener más información en español acerca de enfermedades autoinmunes y tipos de tratamiento disponibles:

http://www.mayoclinic.org/es-es/espanol/search%20results?q=lupus&Page=1&cItems=10

Aquí puede obtener apoyo y ayuda (en inglés), especialmente si utiliza un traductor como Google. Pero esperamos verla en el grupo de español y este es el enlace:

https://connect.mayoclinic.org/group/espanol/

Yes, Based on my family all of my father’s mother side had some kind of autoimmune illness. I only know this from investigating with family and friends of my family back to my Great Grandparents. Parkinson’s, RA, Lupus, ALS, Sjogrens, Celiac Disease, Perphial Neuropathy, Depression and Anxiety. My Rheumotologist believes there are all connected to my challenges. I pray that the medical community will use this information together to treat us proactively rather than just symptomatic. I believe we were given everything we need to take care of ourselves either chemically or organically and the cure is already here, we just have to find it with our educated and thoughtful gifts provided to us. Faith &Courage!

I think there is a genetic link. I have Psoriatic Arthritis. My brother and paternal aunt have RA. That’s as far back as I know. My Father was diagnosed with Fibromyalgia. I am assuming it is linked to his bloodline.

Liked by JohnWBurns

It would be interesting to get a DNA test.

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