Relapsing Polychondritis: Sarah's Health Journey

Hello all!

Sarah Afework (nee Huq) here sharing my story; to help others learn about a rare autoimmune condition I am dealing with, and to ask for help. It has been a very complicated journey over the past 8 years, and I need some help getting to the next step.

A rare disease by definition is one that doesn’t affect large numbers of people. NIH gives a reference of affecting fewer than 200,000 people at any particular time in the United States.

There are about 5000 people in the US with Relapsing Polychondritis (RP). There is not much known, but it does not currently appear to have any genetic inheritance.

I also have the recently worsening and progressing autoimmune condition Psoriatic Arthritis (PsA~330,000 in US). The link between the two conditions is already established, however Psoriasis does have a strong genetic role; 40% of the time there is family history.

Both of these conditions are attacking the structures in the body involved in every move you make. Ligaments, tendons, where they meet the bone (PsA) and specifically cartilage tissue (RP) that is present nearly everywhere - two chronic pain conditions caused by inflammation, pain and swelling. As of yet there is no cure for either PsA or RP.

The rheumatologist here in San Antonio that I have been under the care of has been great.

While I am experiencing flares more constantly and newer symptoms with the RP, there is definite improvement overall and my health appears to be stabilizing. As well as the mental "relief" with having a diagnosis that gives a name and path of treatment to all the myriad of health issues that have come my way.

Without having a diagnosis yet, I had my first psoriatic skin plaques when I went through puberty, and that condition did not reappear noticeably until 2015 when it became severe.

The discovery of my having bilateral severe keratoconus (Structural weakening of the cornea, genetically inclined) and surgical implantation of Ferrara intrastromal corneal rings in my left eye happened in my 20's. While I do have Coke-Bottle Bottom glasses, I am NOT functionally blind!

In 2017 when I was almost 40, I had a large slow growing (12-30 years) benign angiomyolipoma of my right kidney burst and hemorrhage, landing me suddenly in the hospital for a week. A few months later, I had my total right kidney and total right adrenal gland surgically removed. From that point on, I have had to be extremely careful about medications in general, and ibuprophen as pain relief specifically.

That meant, as I was to start having right sided spasms and nerve disturbances and loss over the next few years, I was avoiding medical treatment in favor of physical therapy, massages, exercises, foam rolling, heat, and epsom baths.

Deep infiltrating endometriosis was next visually diagnosed in 2021, and because of how deeply scarred and on nerve related structures it was, there was no surgical treatment at that time. I was fortunate to have health insurance through my job at that time and started medically treating with a new FDA approved med. I also developed new, many and large Uterine Fibroids as repeat ultrasounds were showing; adding to the pelvic and abdominal pain I was dealing with all month long.

I was working with a neurologist, a gynecologist and a GI fairly regularly at this point. I was losing sensation and some motor control on my right side, having some almost-falls and we looked for tumors in the brain, and considered cancers in the rest of the body as well.

I ended up relocating to Texas for work, but I soon found myself without a job and my health worsening.

I have been fortunate to have been able to have the financial support from family in NJ to have been able to make it this far. COBRA insurance, and necessary medications for immunosuppression and just plain LIFE isn't cheap, and I count the blessings I have been given in life that my hard situation is so much better than what it is for SOOOO many people in this world. There are a few close people who have been my anchors during this time.

And it is with their encouragement that I am sharing this with you all, and humbly asking for some assistance. I am closing down San Antonio, and moving to Colorado for the health care available, and that my two dearest and closest friends from the past 10 and 20 years both live within 30 mins of each other.

I am hoping that with any sadaqah/donations able to be offered, I will be able to make these changes and moves towards a healthier, happier, more peaceful life without losing my home to the bank first :-/

Thank you everyone who took the time to read this. Please feel free to reach out to me personally, I welcome the conversation :-)

13 Oct 2023

This is the QR for my Venmo account.