One of the most moving stories that I’ve received has been Tina’s story – shared here last July. Tina is an Indian woman with Lamellar Ichthyosis. Living with Ichthyosis in India is very difficult – the heat, the lack of medical treatment, difficulty in workplace support for disability, and the social fear around visible difference. Tina’s mother – her long term carer – passed away last year. I wanted to help make Tina’s life easier and I started a fundraising campaign to raise money to buy her a cooling vest. Many blog readers contributed to the fundraiser and we ended up raising over $1100 for Tina. This bought her a cooling vest and also some money for her to use for medical supplies and treatments. She’s written a thank you story for the Ichthyosis Awareness Month Blog Project. Here she is with her cooling vest. I’m so glad we were able to make a difference to her.

“Thank you very much for your help in raising the necessary funds for my cooling vest and medical expenses. Your help has really made a big difference for me. I would like to thank all the people who contributed money for my sake. Through your generosity, Carly was able to buy and send the cooling/heating vest via post and transfer Rs 53,000 to my account.

Very frequently I travel to another city (Chennai) to meet with my dermatologist for regular checkups. The money that Carly sent helped me to get all the tests the skin specialist wanted before hand, and, I was able to travel and stay there for a few days without worrying about finance. The dermatologist says that due to lack of calcium and vitamin-D, Osteoporosis is gradually setting in. No wonder my spine is bent and hurts a lot. The space between 4th and 5th vertebrae has diminished. I have another appointment with him in May.

I have great difficulty walking these days as both the knees hurt. Adding to my woes is the summer heat; my body swells, especially in the mornings, hampering my breathing.

I have to regularly take/apply these medicines and creams: Acetritin, Folvite, Glyco – A , Glycerine , Vaseline, band-aid strips, guaze pads , Crepe bandages, chloromicetin applicaps, and vitamin supplements. I also have to see my eye specialist for my glaucoma and dry eye condition. Buying all those medicines and paying the doctors’ fee are too much to handle financially. The money I received from Carly helped a lot to meeting those expenses.

Recently, I met a lady with similar skin condition (Icthyosis but don’t know what type). She works as a maid and financially struggling. I am sharing some medicines and creams with her. She has a brother who also suffers from Icthyosis. I will share with you her story and post her pictures soon.

The cooling/heating vest is just what I needed!! It is keeping me cool and I feel very comfortable wearing it. I will wear it during winter to keep me warm.

Thank you, Carly and everyone for your generosity and benevolence.”

May is Ichthyosis Awareness Month – I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.