My experience with rare diseases helps me navigate a CIDP diagnosis

Several members of my family live with angioedema. My eldest daughter, Aria, has allergic angioedema; my son Dorian has hereditary angioedema (HAE) type 1; my adopted daughter, Leah, has HAE type 2; and I have HAE type 3, or HAE with normal C1-INH.

On top of angioedema, we each live with additional diagnoses. For me, those include Lyme disease, Ehlers-Danlos syndrome, mast cell activation syndrome, irritable bowel syndrome, and long COVID. I also recently learned that my neuropathy issues have progressed to a full-blown diagnosis of chronic inflammatory demyelinating polyneuropathy (CIDP).

Having multiple diagnoses is nothing new for me, but coming to grips with a degenerative and progressive disease is. It has been very sobering, to say the least. While I am aging, now just entering my 60s, I wasn’t fully prepared for decline just yet. With no known family history of CIDP, it came as quite a surprise.

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Of course, my doctor explained the treatment options available for CIDP. I basically had two choices, each with pros and cons.

We believe I’d have the best results from intravenous immunoglobulin therapy. It could help slow or arrest disease progression and, over time, could be administered less frequently. The downside is that it is difficult to get it covered by insurance and would further suppress my immune system.

The other option was oral immunosuppressants. My doctor believes these would be less effective at slowing CIDP progression, and they would still suppress my already compromised immune system.

Immunosuppression is not very appealing to me. It would mean further limiting my exposure to germs, viruses, and other pathogens that affect my health and wellness.

Questions moving forward

My initial shock rapidly segued into grief as I confronted the reality of a progressive disease. How would I continue to care for my family? How could I manage additional complications? Would I be able to keep doing the activities I enjoy? What about all the chores and errands I do for my family? Would I become more of a liability than an asset?

Then came the question of sharing my diagnosis with others. There are so many who do not understand the conditions and limitations I already struggle with. If I offer information about CIDP, will that open me up to the kind of judgment, criticism, and unsolicited commentary and “solutions” that I’ve already had to endure for years?

I finally concluded that, yes, I am ready for all of that. I believe I have endured my health challenges for a reason. In facing adversity, I have become adept at self-advocacy and empowerment. Maybe that is my calling in life. Maybe my struggles and acquired boldness can inspire others. Or maybe I’m simply able to share my newfound strength and resilience with my own family.

Whatever my purpose may be, I don’t have much choice in the matter. This is the path I am walking. I am so very thankful for all the support I do have: my partner, my children and grandchildren, my faith community, my doctors and therapists, and especially my Bionews friends!

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.